2004 - 2007 - Cicely Saunders Institute - King's College London

University of London
Department of Palliative Care, Policy & Rehabilitation
School of Medicine at Guy's, King's College
and St Thomas' Hospitals
King's College London
Triennial Report 2004/5-2006/7

CONTENTS
1 Highlights 2
2 Research 3
2.1 Evaluating & Improving Care 3
2.1.1 Improving Care and Services for People Affected by Cancer 4
2.1.2 Improving Care and Services for People Affected by Neurological Conditions 5
2.1.3 Evaluating and Improving the Cost-efficiency of rehabilitation 6
2.1.4 Improving Care and Services for People Affected by HIV or AIDS 6
2.1.5 Improving Care and Services in Patients with Chronic Heart Failure 7
2.1.6 Improving Care and Services in Primary Palliative Care 7
2.1.7 Improving the Methods to Evaluate Care and Treatments 8
2.2 Symptom Led Research 11
2.2.1 Measuring Symptoms across Five Far Advanced Diseases 11
2.2.2 Symptoms and Care Needs Among People Dying with End-Stage Renal Disease 11
2.2.3 Symptoms in Multiple Sclerosis (MS) 12
2.2.4 ‘Improving Breathlessness’ Programme 12
2.2.5 Managing Symptoms in Complex Neurological Disability 13
2.3 Measuring Outcomes 15
2.3.1 Patient Centred Palliative Outcome Scales 15
2.3.2 Common Language Outcome Measures for Rehabilitation in the UK 16
2.4 Living & Dying in Society 19
2.4.1 A Good Death at Home: Committed to Making it an Achievable Goal 19
2.4.2 Carer Experiences in Long-term Neurological Conditions 20
2.4.3 Ethnicity and Culture 21
2.4.4 Better Palliative Care for Older People 21
3 Policy, Guidelines and Needs Assessments 23
3.1 Guidelines 23
3.2 Needs Assessments 23
3.2.1 Epidemiological Based Needs Assessment 23
3.2.2 Individual Based Needs Assessments 23
4 Clinical Services 24
4.1 Improving Care for People Affected by Multiple Sclerosis (MS): Translation of Study Outcomes to the Clinical Setting 24
4.2 Improving Care for People with Chronic Heart Failure: Translation of Heart Failure Study to Clinical Setting 25
5 Education and Outreach 27
5.1 General Education: Seminars, Masterclasses and Targeted Programmes 27
5.2 MSc, Postgraduate Diploma and Postgraduate Certificate in Palliative Care 28
5.3 Successful MSc Alumni and their Research Study Project Titles 29
5.4 Undergraduate Education 31
6 The Cicely Saunders Institute of Palliative Care 32
7 Research Collaborations, External Committee Work and International Keynote Lectures 33
7.1 Collaborations 33
7.2 Involvement in External Committees 2004/5 – 2006/7 34
7.3 International and Keynote Lectures 36
8 Publication List 38
9 Research Support 53
10 Developments in Staffing 54
Staff Biographies 55
III

1
Highlights
2007 is the 10-year anniversary of the founding of
the Department of Palliative Care and Policy, which
has grown in that time from a department comprising
Professor Irene Higginson and two researchers (both on
grant funding) to a large, multi-professional department
with well over 40 staff, plus many honorary and visiting
appointments. Although very saddened by the loss of
Dame Cicely Saunders in July 2005 we have continued
to drive forward her vision, through research, education,
care and, importantly, the plans to develop an institute
in her name.
Our research is mainly applied and translational
– concerned with discovering solutions to improve the
care, symptom management and support for those
affected by life threatening, progressive or profoundly
disabling conditions. In this regard, palliative care and
rehabilitation have much in common. Both specialities
seek to add quality of life to the time available (whether
in living with a disability or in dying), rather than finding
a ‘cure to a disease’. They seek to cure or reduce the
effects of symptoms, promote dignity and social and
emotional support. Both involve complex ‘interventions’
from a multidisciplinary team of professionals, and the
success of that intervention must usually be judged on
a background of deterioration in the person’s condition.
Thus, the two fields face similar research challenges.
This is reflected in our research activity where there is
the potential to learn from each other, and from other
fields, in the measurement of outcomes, in the design
of evaluations of complex interventions and in the future
in seeking potential solutions to symptoms, methods
and ways to promote dignity and support for carers. As
the remit of palliative care extends beyond cancer to
include people with other long term conditions, there is
an interface to be explored between rehabilitation and
palliative care services to support people who live their
lives with complex disability.
what factors influence whether people are able to
be cared for at home and to die at home, making an
important contribution to end of life strategies in many
countries. We have evolved several new strands of
research, particularly on palliative care in Africa, the
costs and benefits of rehabilitation, and improving
palliative care for older people. During the period of the
report, we have seen 53 MSc, Diploma and Certificate
students graduate, along with 3 successful PhD awards,
while continuing to evolve our undergraduate education
programme.
The following pages outline our research activity across
four main strands - evaluating and improving care;
symptom led research; measuring outcomes; and living
and dying in society. It outlines our influences on policy
and guidelines, educational and clinical activities, and
the plans for the new Institute of Palliative Care. Shortly
before her death, Dame Cicely Saunders was delighted
to see plans for her brainchild developing – to create
the world’s first purpose built Institute of Palliative
Care. At the end of the report we list publications,
keynote lectures and supporters, along with a full list of
staff. We are grateful to a wide range of collaborators
and colleagues with whom we work in research,
teaching, care and policy. Special thanks go to those
organisations, statutory and charitable, and individuals
that support our activities. In a climate where in the
UK less than 0.2% of the research spend in cancer
goes to palliative and end of life care, with probably
a lower proportion than this being allocated in noncancer
conditions, their leadership has been vital to our
continued work.
In the period of this report, 2004/5 to 2006/7, our
research, teaching and policy development have
advanced considerably locally, nationally and
internationally. We have seen the fuller integration of
palliative care and rehabilitation, especially as work
in palliative care grows to consider those people with
longer illness trajectories, with cancer, non-cancer
and multiple conditions. Our results have underpinned
some of the most significant national and international
guidance, including from the National Institute of
Clinical Excellence (NICE) in the UK, the State of the
Science Report on End of Life Care in the USA, the UK
Government White Paper on Our Health Our Choice
Our Lives, the House of Commons Health Committee
Report on End of Life Care and several National Service
Frameworks, including that on Long Term Neurological
Conditions in which Professor Lynne Turner-Stokes and
her team played a substantial role.
We have tested and discovered new means to improve
the management of symptoms, such as breathlessness
and spasticity, and have trialled new services for people
with conditions beyond cancer. We have discovered
2

2
Research
Research activity falls into four main programmes
(see figure 2.1). Each programme has a series of interrelated
projects and sub-programmes, with defined
outputs and links to improve practice and care. Across
all strands we are active in influencing policy and
practice, teaching, dissemination and refining the
methods to undertake research. As is clear from the
text, we have a particular expertise in mixed methods,
combining quantitative and qualitative approaches and
in translational and applied research – seeking to make
an early and sustained difference to the care of patients
and families.
2.1 Evaluating & Improving Care
Overview
Palliative care and rehabilitation both suffer from a
lack of evidence about effective models of care and
treatment, partly because research among severely ill
or disabled people is difficult. However, work in our
department has tackled these problems, conducting
research and systematic reviews and developing the
methodologies to evaluate care and services, often
using the MRC framework for the development and
evaluation of complex interventions.
die do so from diseases other than cancer. Therefore
while continuing a strong theme of research in cancer
(cancer patients still remain an important core of
palliative care), we have extended our research into
non-cancer. Little is known about their experiences and
in particular what services and care might help them.
Our work in understanding symptoms found similar
symptoms across five common diseases towards the
end of life (see section 2.2), suggesting that palliative
care may be valuable. But we still needed to answer the
question - what models of care or services might help?
Simply taking palliative care as it is offered for people
with cancer may not be appropriate because of
differences in other existing services, information,
expectations and prognosis, and not knowing when is
the right time to offer services. Therefore, we began a
programme of work to develop and test palliative care
services for people affected by conditions other than
cancer, focusing on some specific conditions, which
might serve as a model for others.
Our 2001-3 report showed how palliative care has
traditionally focussed on people with cancer, with
around 95% of people in hospices and home care
teams having cancer. However, 3 out of 4 people who
Figure 2.1: Map of Department Research Programmes
Multi–professional academic and clinical research team
Evaluating and
improving care
Symptom Led Research Measuring Outcomes Living and Dying in Society
Cancer
Symptoms across diseases
Palliative Care Outcome
Scale (POS)
Place of Death
Neurological
Symptoms in renal disease
Support Team Assessment
Schedule (STAS)
Ageing
HIV/AIDS
Breathlessness
Measures of Complex
Disability
Carers
Rehabilitation
Spasticity
Ethnicity and Culture
Primary care
Pain
Depression
Methodological Development
Policy and Guidance
Teaching
Dissemination
Collaboration
3

2.1.1 Improving Care and Services for People
Affected by Cancer
Gysels and Higginson conducted, for the National
Institute of Clinical Excellence (NICE), the first comprehensive
robust appraisal of research evidence in
Supportive and Palliative Care in Cancer. Published in
2004, this was the culmination of three years research,
building on earlier systematic reviews within the
department. It combined and appraised findings from
339 studies from across the globe. It showed for the first
time evidence for the effectiveness of some components
of supportive and palliative care, especially for multiprofessional
specialist palliative care teams, information
provision and communication skills training 68 .
Communication, co-ordination and patient
education
In an analysis of effectiveness, 12 studies (15 papers)
showed communication skills training improved the
communication of doctors and nurses, as assessed by
self-report and patients, with effect sizes ranging from
0.15 (modest) to 2 (high) 9 . One further study showed
deterioration in outcomes. In depth analysis found that
to be most effective at changing practice (and not just
skills in artificial situations) training programmes need to
take into account and address attitudes and beliefs 9 .
These findings led the Department of Health in the UK
to support a national roll out of communication skills
training, to commit funding to specialist palliative care
services and provided for the first time a research basis
for supportive and palliative care elements of National
Standards in Cancer Care, which now form part of the
National Health Service Peer Review for cancer.
However, there is also the problem of communicating
between services. Farquhar, Barclay and colleagues
studied in depth the concerns of GPs - of most concern
was tardiness (with delays of up to eight days) especially
at three stages in the patient journeys: (1) in the prediagnostic
and diagnostic stage; (2) in the active
treatment phase; and (3) when oncology withdrew and
the focus of care switched back to the community for
the terminal phase 142 , leading to suggestions in the NICE
guidance about the prompt timing of information and the
use of standardised formats.
Interactive technologies and videotapes appear to be a
promising method for patient education in cancer care.
In an analysis of 1,678 patients, educational technologies
showed improved patient knowledge but no change
in patient satisfaction 320 although the analysis identified
problems of heterogeneity (see figure 2.3).
Figure 2.2 The NICE Research evidence produced by the
team at King’s in 2004, which is now improving how cancer
care and support is provided
Figure 2.3. Meta-analysis showing that video technologies in patient education improve knowledge but not satisfaction
Source: Gysels and Higginson, Supportive Care in Cancer, 2007;15:7-20
4

Equivocal results were found in a systematic review of
seven randomised and six non-experimental studies
testing the role of patient held records in improving communication
and information exchange. In particular, the
randomised studies found an absence of effect, but the
non-experimental evaluations shed light on the
conditions for most successful use. Although most
patients in all the studies welcomed the introduction of a
patient held record, there were instances where it was
not suitable for different groups, and a lack of
agreement between patients and health professionals
regarding its function 322 .
Wider effects of the NICE guidance
In some areas of supportive and palliative care our
review found a dearth of robust studies evaluating
services or understanding the longitudinal experience of
cancer, sometimes because of methodological
challenges, in contrast to a relative abundance of crosssectional
studies assessing need 15 . An analysis of
evaluations of palliative day care found qualitative
support for services, but a lack of quantitative studies 137 .
A similar picture was found for hypnotherapy used to
treat symptoms in advanced cancer 160 . An overwhelming
recommendation was that there should be sustained
programmes of research into testing solutions and
longitudinal study. Furthermore the work strongly
advocated that services should be developed only in the
context of robust evaluation. This finding fed into the
National Cancer Research Institute’s analysis of
research in Supportive and Palliative Care to begin to
emphasise research to evaluate services and
treatments.
But the Gysels and Higginson review had much wider
effects. It formed the bedrock for the evidence reviews
for the National Service Framework on Long Term
Neurological Conditions, led by Turner-Stokes and
colleagues, which also found evidence to support some
models of rehabilitation and palliative care. In addition, it
underpinned appraisals in other countries, including the
State of the Science Review on End of Life Care,
National Institutes of Health, USA.
Survival and quality of life in advanced cancer
In collaboration with colleagues in the USA and Canada,
through a visiting appointment of Dr Antonio Vigano, we
analysed data from two independent cohorts (248
patients in Canada [collected by Professor Eduardo
Bruera and team - Cohort 1] and 756 patients in Ireland
[collected by Professor Irene Higginson and team and
using the outcome measures that we had previously
developed and validated - Cohort 2]. After adjusting for
clinical and demographics variables, using Cox
regression models, physical health related quality of life
indicators - dyspnoea, nausea/emesis and weakness –
were associated with survival, as were liver metastases,
lung tumour and tumour burden. In contrast, emotional
functioning, anxiety, spiritual distress, and lack of insight
were not associated consistently with survival in either
cohort. The study brings into question the prognostic
significance of "positive attitudes", such as hope and
optimism, in patients with advanced cancer, and instead
suggests that physical indicators are more important 34 .
2.1.2 Improving Care and Services for People
Affected by Neurological Conditions
Through collaboration with colleagues in Neurology we
have established the King’s Centre for Palliative Care in
Neurology – a ‘virtual centre’ representing a collaboration
to foster and further research to improve the care of
patients with neurological conditions who need palliative
care and/or rehabilitation.
Developing and testing new palliative care
services for people affected by Multiple Sclerosis
Multiple sclerosis (MS) is a chronic disease affecting the
central nervous system. It affects over 2.5 million people
worldwide, is the commonest cause of neurological
disability in adults under 60 years, and is associated
with a wide spectrum of physical and psychological
symptoms. While the outlook for many is good and
some have a normal life expectancy, around 45% of
people do develop progressive forms, either from the
outset or at later stages, with profound effects not only
for themselves but also their carers.
Developing and testing palliative care for people
affected by MS raises important questions. How should
the service be modelled? What sort of staff does it
need? When is it really needed? Who might benefit
most? Will it replace or supplement existing services?
How might it work with these? Nowhere in the world are
these questions answered.
To investigate this we embarked on a programme,
supported by the UK MS Society, using the MRC
Framework for Evaluating Complex Interventions (see in
Focus 2.1) to develop and test a new palliative care
service for people with MS.
We found that people with the progressive forms of MS
had new concerns about losses and changes (including
financial worries), as a result of the illness. In addition, they
reported ‘having to fight for everything’ as far as access to
care was concerned. This was closely linked to a lack of
coordination and continuity of care, difficulties getting
appropriate information and a poor quality non-specialist
care 319 . While these findings from in depth interviews
made great sense to people affected by MS, Edmonds et
al’s 319 report was the first systematic analysis.
Further interviews and focus groups with healthcare
professionals echoed the patients’ concerns with poor
continuity of care and limited resources. But in addition
doctors and nurses were also bothered by communication
between professionals; unequal provision of and access
to services; patients’ problems with some symptoms,
especially with cognition; bladder and sexual function; and
the needs of patients and their carers around the end of a
person’s life. All these difficulties were compounded
because of the unpredictable course of MS 232 .
This information enabled us to model a new palliative
care service for people affected by MS. This consisted
of a consultant in palliative medicine, a clinical nurse
specialist and a psychosocial worker, some shared with
the existing palliative care service and with close
integration with neurology services. We evaluated this
using our new methods of a fast track versus standard
randomised controlled trial 232 and results are currently
being analysed.
5

As part of the project, resources have been developed
to support people affected by MS and health and social
care professionals, including a referral pathway for care
professionals and a paper and web-based service
directory (see section 4.1).
The palliative care needs of people with
late stage Parkinson’s Disease (PD), Multiple
System Atrophy (MSA), and Progressive
Supranuclear Palsy (PSP)
Building on our earlier research we have commenced a
new study, supported by the Department of Health (UK)
to understand the experiences and needs of people
severely affected by PD, MSA and PSP in order to identify
the most effective approaches to enhancing quality of life
and providing flexible personalised support. Patients and
carers are recruited to a longitudinal study, which
measures symptom problems and costs of care.
2.1.3 Evaluating and Improving the Costefficiency
of Rehabilitation
There is now reasonable evidence to support the costeffectiveness
of rehabilitation following brain injury 84 .
But which patients may benefit most?
Routine collection of data in the course of clinical
practice is key to the demonstration of effective and
cost-efficient practice. Within this three-year cycle,
Turner-Stokes et al have analysed a six-year longitudinal
cohort 251 to examine whether our rehabilitation
programme is effective in reducing long term care
needs, such that it could pay for itself through reducing
the cost of on-going care. The programme uses
measures developed in earlier research (see section 2.3).
It is often thought that rehabilitation is not worthwhile for
very severely dependent patients because they will remain
dependent on care to some degree. However, our study
showed that, contrary to expectation, rehabilitation was
in fact most cost-effective for these heavily dependent
patients. Although they required longer periods of
rehabilitation, and thus cost more to treat, the gains
in reduction of care costs were much higher than in the
less dependent group, so the initial cost of rehabilitation
was more quickly offset by savings in on-going care 252 .
Moreover, serial analysis of change in dependency for the
most dependent and long-staying patients confirmed that
they continued to make changes throughout their
admission, and that earlier discharge would have led to
poor outcomes and increased care needs 313 .
The Functional Independence Measure (FIM TM ) is widely
used in the USA and Europe as an outcome measure for
rehabilitation and benchmarking of services and FIMefficiency
(Gain in FIM score / Length of stay) is often
used as a surrogate for cost-efficiency. A further
interesting finding from this study was that the FIM did
not demonstrate the additional cost benefits of rehabilitation
in the highest dependency group that were
revealed by the group’s new measure, the NPDS (see
figure 2.4) 314 .
2.1.4 Improving Care and Services for People
Affected by HIV or AIDS
In the era of antiretroviral therapy (ART), palliative care has
a new and evolving role in supporting treatment, as well as
caring for those for whom treatment is either not available
or cannot prevent disease progression. All of these groups
may require palliative care to address the physical,
spiritual and emotional pain related to the disease and its
treatment. It should be remembered that there are
significant excess risks associated with HIV infection for
several cancers, including Kaposi’s Sarcoma, lymphoma,
vulval and cervical cancer; linking our work in this
programme very directly with our cancer programme.
Harding and Higginson have been collaborating in the
USA, UK and Africa to investigate the palliative care
needs of patients with early as well as advanced disease,
both in resource-rich and resource-poor countries.
Change in FIM score
Change in NPDS score
100
20
80
10
60
0
Change in Total FIM
40
20
0
-20
-40
N= 83
Low
Dependency group
111
Medium
102
High
Change in NPDS score
-10
-20
-30
-40
-50
-60
N= 82
Low
Dependency group
111
Medium
100
High
Figure 2.4 Comparison of the change in FIM (old measure) and NPDS (new more sensitive measure) scores across the three dependency groups.
Box plots show median, inter-quartile range, range and outliers
Source: Turner-Stokes et al, Arch Phys Med Rehab 2006; 87(11) e11.
6

Evaluation of HIV/AIDS services
in the USA and UK
In collaboration with colleagues in the USA, we evaluated
new palliative care services for people with HIV and AIDS.
Analysis of clients needs entering the three services
identified problems of poor mental health 24 , especially
clients with history of drug dependence (in Baltimore) and
more severe physical symptoms (in New York).
Conversely, better mental health was most strongly
correlated with more positive perceptions of interpersonal
relationships and of meaning and purpose in life,
underlining the need to take a holistic approach to care.
Most clients at all programs were socioeconomically
disadvantaged, from ethnic minorities, and had a history
of substance abuse, although significant differences were
noted in the distributions of clients at each program with
regard to these characteristics. A common set of medical
(ambulatory/outpatient care, laboratory testing,
pharmacy) and ancillary (nutritional counselling, transportation)
services were identified by at least 25% of clients
and staff at each program. These findings suggested
there is a need for a mix of "care" and "cure" services to
reflect the erratic disease trajectory experienced by some
clients who move in and out of treatment as well as the
vulnerability and marginalized lives of the clients served
by these programs 23 .
Two systematic literature reviews appraised effectiveness
of 146 and access to 147 palliative care in HIV disease.
Analysing data from 34 studies found that home and
inpatient palliative care significantly improved patient pain
and symptom control, anxiety, insight, and spiritual
wellbeing 146 . Despite this evidence, and the clear
symptom and psychological needs care is often poor and
less than optimal. The results proposed a model of
integrated palliative care from diagnosis to end-of-life,
alongside antiretroviral therapy when initiated.
HIV/AIDS and cancer research in Africa
Supported by the Princess Diana Foundation, Harding
and Higginson researched the nature of palliative care
services in Africa 148 . Here the palliative care services
support patients with both cancer and HIV/AIDS. The
analysis suggested home and community-based
palliative care has been largely successful, but
community capacity and the resources and clinical
supervision necessary to sustain quality care are
lacking. Coverage and referrals must be primary
concerns. Simple lay and professional protocols have
been developed, but opioid availability remains a major
constraint to the success of palliative care programmes
in Africa. Areas of good practice, and areas where
further success may be achieved include: attention to
community needs and capacity; explicit frameworks for
service development and palliative-care integration
throughout the disease course (including antiretroviral
provision); further education and protocols; strengthening
and dissemination of diverse referral and care
systems; increasing advocacy; and funding and
technical skills to build audit and quality assessment.
Building from this Logie and Harding found that although
morphine regulation had achieved its goal of preventing
misuse and leakage from the supply chain, confusion
and complexity in storage and authorisation rules led to
discontinuation of opioid pain management for patients
and also wasted service time in trying to obtain supplies
to which they were entitled. The multi-method study also
identified under-prescribing, as a result of clinician
behaviour and public fear of opioids 158 .
In a new partnership with MEASURE Evaluation (an
evaluation team at the University of North Carolina, USA)
Harding and Higginson have launched a new
programme to evaluate the palliative care for patients
with HIV in Kenya and Uganda. This will be the first
study in the world to evaluate the clinical, social and
psychological outcomes and costs comparing different
models of palliative care in Africa. It is being conducted
in collaboration with Paul McCrone, Health Economist in
the Institute of Psychiatry, King’s College London.
2.1.5 Improving Care and Services in Patients
with Chronic Heart Failure
In advance of developing a new clinical service at Guy’s
and St Thomas’ Hospital, the end of life preferences of
patients and families were explored. Of the 20 patients, all
with New York Heart Association Functional classification
III – IV, and 11 family carers, none had discussed their end
of life preferences with clinicians or were aware of choices
or alternatives in future care, such as availability of
palliative services. The patients and families appeared to
be living with fear and anxiety but were uninformed about
the implications of their diagnoses. Interviews with
clinicians confirmed that they rarely raised such issues
with patients. The results highlighted a need to provide
mechanisms to offer sensitively developed information
and opportunities for discussion about future care issues,
including the end of life and has led to agreed referral
criteria and a preliminary care pathway, which will be
evaluated through future research 337 .
2.1.6 Improving Care and Services in Primary
Palliative Care
Evaluating the National Palliative Care
Education and Support Programme for District
and Community Nurses
The department was commissioned by the Department
of Health (DoH) to evaluate this national palliative care
education and support programme for district and
community nurses which ran from 2001-2004. Professor
Julia Addington-Hall led this multi-professional and
multi-site project, with Cathy Shipman as the primary
researcher. It aimed to evaluate the acceptability and
effectiveness of the programme by assessing whether it
had measurable impact on district nurses’ (DNs)
confidence in competency and knowledge, on GPs
perceptions of the adequacy of communication, on the
views of bereaved relatives, on place of death and
referrals to specialist palliative care services.
The educational programmes were provided through all
34 Cancer Networks in England and the range of
educational models and methods of delivery used were
identified and categorised. Both quantitative and
qualitative methods were used in a ‘before and after
design’ to assess the impact of the programme in eight
randomly selected cancer networks on the confidence
and knowledge of DNs, views of GPs and of bereaved
carers. Quantitative methods included using postal questionnaires
and qualitative methods included conducting
face-to-face and telephone interviews and focus groups.
A major success was the nationwide development of
educational programmes across all 34 Cancer Networks
7

which focused on a core curriculum although delivering
this in varying ways dependent on local needs and
resources. The process of establishing and providing
the educational programmes led to improved relationships
between specialist palliative care providers and
primary care practitioners. About one third of members
of DN teams in England were estimated to have been in
contact with one of the network programmes, and there
were small statistically significant improvements
identified in DNs perceptions of confidence in palliative
care competencies and in palliative care knowledge.
Interviews with DNs, programme providers and commissioners
identified ways in which the programmes were
felt to have been successful. Further details of results
can be found in the report to the DoH which can be
accessed via www.kcl.ac.uk/palliative.
Working with Primary Care Trusts (PCTs):
Perspectives on caring for dying people
in London
A two year research and development project was
completed in March 2005 185 for the King’s Fund. This
project, which worked with five PCTs across London,
found variations between how different PCTs organised
their community palliative care services and in the range of
services offered. The three key services providing palliative
care within primary care were GPs, district nurses and
clinical nurse specialists, linked together within a
‘Supportive Triangle.’ Good relationships underpinned this
collaboration, but over-stressed services and communication
breakdowns could threaten it.
Evaluation of a telephone advice and
information line for patients with advanced
disease and their carers
One barrier to effective primary palliative care is the
fundamental lack of awareness of palliative care and
related services among disadvantaged groups within
society, such as people over 65, people from black and
ethnic minority (BME) communities and those living in
socially and materially deprived areas. The usage of
traditional routes to access health information and
advice, such as NHS Direct, is equally low among these
vulnerable groups. On the basis of these findings, a
partnership was established between NHS Direct and
the King’s Fund to launch a pilot project called
COMPASS, a palliative care telephone helpline for
patients, carers and health care professionals.
Longhurst, Koffman and Shipman conducted a process
evaluation of COMPASS, auditing calls, conducting
qualitative interviews with staff, managers and key
stakeholders and follow-up interviews with callers to the
helpline. The results suggested that COMPASS provided
information to previously underserved population groups
such as ethnic minorities, and was a resource for health
professionals 384 .
Scoping exercise on generalist services for
adults at the end of life: research, knowledge,
policy and future research needs
Higginson and Shipman are leading a multi-site international
team that won, in 2006, the NHS Service Delivery &
Organisation R&D Programme (SDO) call to undertake a
scoping exercise on generalist services for adults at the
end of life. The work maps current research, knowledge
and policy to identify specific topics for research to
inform the future commissioning by the SDO programme.
This exercise presented an important opportunity to
identify priorities for research to improve generalist
services for adults at the end of life, which will lead
directly to a call for research by SDO in 2008, and may
influence the support by other research organisations.
2.1.7 Improving the Methods to Evaluate Care
and Treatments
Because of the lack of evaluative studies our work has
focused on refining the methods to evaluate services
and treatments, building on the MRC framework for the
evaluation of complex interventions (see In Focus 2.1),
and applying this in two recent studies. Through this and
other methods we have developed and refined
randomised controlled trial (RCT) methods, seeking to
overcome many of the problems found in previous
palliative care and rehabilitation trials. In addition to
using for the first time in palliative care a delayed
intervention randomised trial (In Focus 2.1). Separately
Harding and colleagues 13 developed methods for, and
conducted, a community based RCT of multi-session
group work for HIV prevention among 50 gay men in the
UK. At eight weeks, those attending the group reported
significant gains over their control in making sexual
choices, physical safety, HIV and STI transmission
knowledge, and sexual negotiation skills. The trial also
demonstrated that high-risk community samples could
be recruited to multi-session interventions, and provided
feasibility data for future evaluations.
Health economic evaluation in palliative care is in its
infancy, and yet there is a desperate need to understand
better the costs of, and choices between, services.
Standard utility measures based on survival, such as
Quality Adjusted Life Years, do not reflect the needs and
concerns in palliative care or rehabilitation. Working with
colleagues at the London School of Hygiene and
Tropical Medicine, we found that a new approach, the
Choice Experimentation Method, could be used in
palliative day care to help patients prioritise between
different service elements 138 . In 79 patients attending
four day care centres, the Choice Experimentation
Method found that access to specialist therapies was
three times more important than medical support, and
twice as important as staying all day. More recently,
working with Dr Paul McCrone and colleagues at the
Institute of Psychiatry, we have begun to measure costs
of health and social care, the costs incurred by patients
and families, and the cost effectivness of treatments
in some of our studies.
8

In focus 2.1 New methods to evaluate services
Refining the MRC Framework in palliative care
and developing a new approach to randomised
controlled trials
Patients and families in palliative care and rehabilitation
have complex needs, often needing multi-professional
and complex services. Therefore, we looked to follow
the latest developments in health care research and
found valuable the Medical Research Council’s (MRC)
‘Framework for the Development and Evaluation of RCTs
for Complex Interventions to Improve Health’ (MRC,
London 2000). This provides investigators with guidance
in recognising the unique challenges that arise in the
evaluation of complex interventions, as well as
suggesting strategies for addressing these issues in the
development of trials.
Complex interventions are built from a number of
components which may act independently and interdependently.
The framework suggests that a series of
phases of investigation take place which may, in reality, be
more iterative (Campbell et al, BMJ 2000;321:694-696)
including: 1) a ‘Pre-clinical’ or theoretical phase; 2) Phase I
or modelling; 3) Phase II or exploratory trial; 4) Phase III or
definitive RCT; and 5) Phase IV or long-term surveillance
(see figure). We believed that this framework would be
especially useful because our earlier systematic reviews
(Higginson et al, JPSM 2003;25:150-168, Harding and
Higginson, Pall Med 2003;17:63-74; see also 2001-3
report) and the results of the NICE guidance on supportive
and palliative care 68 had found a poor understanding of
what services did, wide variation in practice, as well as
poor evaluation designs, which led to failed studies.
We worked with the framework and are using it in two
studies to evaluate palliative care ‘complex interventions’:
(a) A new palliative care service for people
severely affected by MS (see section 2.1.2); and (b) A
Breathlessness Intervention Service (see section 2.2).
The randomised trial; gave good recruitment
and was acceptable in palliative care
Although use of the MRC framework in palliative care
evaluation is in itself innovative, we also have tested a
further new development for palliative care research –
that of using fast-track versus standard (or wait-list/
delayed intervention) designs for their Phase II trials 232 .
This design has been used in studies of behavioural
interventions in education (Flannery et al, Dev Psychol
2003;39:292-308), health education (Morgan et al, Rev
Med 1996;25:346-354) and occasionally in health care
(Fonda et al, Age and Ageing 1995;24:283-286). In the
trial, the ‘fast-track’ group receive the intervention or
service immediately after baseline interview, whereas
the control group also receive the intervention, but only
after a period of delay. As a result, potentially every
participant is offered the intervention, potentially
reducing selection bias and disappointment. In the
health services some delay is often common, and even
in palliative care there are waiting lists for some services
and others that are not widely available.
Theory
Modelling
Exporatory trial
Definitive RCT
Long–term
implementation
Explore relevant
theory and
evidence to ensure
best choice of
intervention
and predict
confounders
Identify
components
of required
intervention and
the underlying
mechanisms,
explore how
intervention might
work in practice
Describe the
components of the
intervention, test
its likely effects
and protocol for
comparitive study,
continue to revise
intervention
Test fully developed
intervention
compared to
alternative/control
in appropriate
comparitive
protocol in study
with appropriate
statistical power
Determine
whether others
can replicate the
results by testing
in multi–centre
studies
Pre–clinical–
Phase 0
Phase 1 Phase II Phase III Phase IV
Continuum of increasing evidence
Figure 2.5 The Medical Research Council Framework for the development and evaluation of complex interventions
Source: MRC.ac.uk
9

Our trials using this design have achieved substantially
better uptake and recruitment than previous palliative
care randomised trials 232 . While many factors may have
contributed to our improved recruitment, to date we
have found the use of the MRC framework and the ‘fasttrack’
versus ‘current best practice’ design acceptable
to staff, patients, families, patient representative
organisations, funders and research ethics committees.
In both studies we have found that attention is needed to
decide the ‘correct’ period of control before the intervention
is offered. This had to be different in our two
studies - because we had to base it on how stable the
patients were and how quickly we expected the service
to have an effect. We have also found that using the
MRC Framework was more costly than traditional
designs, in the short term, because of the need to
undertake phase I and II work 232 . However, in the long
term, if the trial is successful it represents a good
investment in research, especially as traditional designs
have often failed.
Almost all studies within the department employ mixed
method approaches - where quantitative and qualitative
methods are used together, one informing the other. We
are further developing the ways that these methods are
integrated and work to give a rounded picture of the
issues faced by patients and families, whose problems
are usually complex and multi-dimensional, requiring a
multi-professional and multi-method approach, especially
to capture less tangible aspects such as quality of life,
quality of care, dignity and caregiver needs.
10

2.2
Symptom Led Research
Our research into symptoms assessed both the range of
symptoms in different conditions, and the management
of individual symptoms, which can be common across
several conditions.
2.2.1 Measuring Symptoms Across Five Far
Advanced Diseases
Research by Solano, Gomes and Higginson 250 , and
supported by Cicely Saunders International, established
that patients’ symptoms, especially pain, fatigue and
breathlessness, are as common and as high in four nonmalignant
diseases as in cancer. This evidence has been
instrumental in advocating the expansion of palliative
care beyond cancer, so that patients with other
advanced and progressive diseases such as chronic
heart disease, AIDS, COPD and end stage renal failure
can benefit. It also produced symptom profiles for these
groups of patients, which can be used as a preliminary
basis to model services.
The comparative grid (see table 2.1) showed that the
prevalence of the 11 symptoms is widely but homogeneously
spread across the five diseases, thus there
appears to be a common pathway towards death for
malignant and non-malignant diseases.
2.2.2 Symptoms and Care Needs Among
People Dying with End-Stage Renal Disease
In collaboration with the Renal Units at King’s College
Hospital, Guy’s Hospital, and Canterbury Hospital this
innovative study, led by Murtagh and Higginson, is at the
forefront of research into the palliative care needs of
patients with end-stage renal disease who are managed
conservatively, without dialysis. Nephrology services are
recognising that this steadily increasing group of
patients have unmet palliative care needs. There is
however little evidence to underpin service development.
This study is beginning to address this gap, supported
by the Guys and St Thomas’ Charity.
A systematic review of symptom prevalence in renal
disease found no studies among patients who are
conservatively managed 331 , as well as a lack of longitudinal
studies. The similarity of symptoms between endstage
renal disease and cancer were confirmed in a pilot
survey 247 . This led to the development of a longitudinal
study, which is due to report in 2007/8.
However, our first cross-sectional data on the epidemiology
of symptoms shows levels of symptom prevalence
and overall symptom burden that are comparable to
those experienced by patients with cancer and other noncancer
diseases (see figure 2.6). Opioid use for analgesia
in these patients is especially challenging, and as a result,
evidence-based detailed clinical recommendations have
been prepared 388 . Qualitative data on the impact of
symptoms, information and care preferences of this very
elderly population is currently being analysed.
Symptoms
Cancer
AIDS
Heart Disease
COPD
Renal Disease
Pain
35–96%
63–80%
41–77%
34–77%
47–50%
Fatigue
32–90%
54–85%
69–82%
68–80%
73–87%
Breathlessness
10–70%
11–62%
60–88%
90–95%
11–62%
Anorexia
30–92%
51%
21–41%
35–67%
25–64%
Confusion
6-93%
30–65%
18–32%
18–33%
–
Anxiety
13–79%
8–34%
49%
51–75%
39–70%
Depression
3–77%
10–82%
9–36%
37–71%
5–60%
Insomnia
9–69%
74%
36–48%
55–65%
31–71%
Nausea
6–68%
43–49%
17–48%
–
30–43%
Constipation
23–65%
34–35%
38–42%
27–44%
29–70%
Diarrhoea
3–29%
30–90%
12%
–
21%
Table 2.1 Prevalence of Symptoms in Five Advanced Diseases; results of a systematic review
Source: Solano et al, JPSM 2006;30(1):58-69
_
11

2.2.3 Symptoms in Multiple Sclerosis (MS)
As part of the development and evaluation of palliative
care services for people affected by MS (see 2.1.2) we
found that people severely affected by MS had an
average of nine (median = 8.5, mode = 12) symptoms.
As for other conditions, pain and fatigue/lack of energy
were found in over 50% of the 52 study participants, but
four other symptoms were equally common - problems
using legs, problems using arms, spasms, and feeling
sleepy. Higher levels of disability were correlated with
greater symptom severity for nine symptoms (Spearman
rho 0.28-0.56, p < 0.05), suggesting that there was a
weak to modest link between increasing disability and
more severe symptoms 231 .
2.2.4 ‘Improving Breathlessness’ Programme
A five-year integrated programme on breathlessness
commenced in September 2004. Primarily supported by
Cicely Saunders International and led by Higginson,
Gysels and Booth, it builds on work within King’s and
Cambridge, with specific projects winning external
funding. Individual projects are testing treatments and
new models of care and are providing a better understanding
of the experience of breathlessness among
patients and their carers over time. Their results are
being combined to discover multi-professional multidimensional
means to alleviate breathlessness.
Improving the experience of breathlessness
in different conditions
Exploring the experience of breathlessness in 27
patients with chronic heart failure, Edmonds and
colleagues identified three dominant experiences of
breathlessness, "everyday", "worsening" and "uncontrollable",
predominantly focused on physical functioning.
Worsening breathlessness was a symptom that patients
were unable to manage and prompted a hospital
admission, whereas uncontrollable breathlessness was
experienced as a symptom that even health care
professionals struggled to control 140 . However, it is not
known whether heart failure patients' descriptions of
breathlessness are different to those of cancer patients.
Therefore, Gysels, Bausewein, Malik and Higginson are
embarking on an integrated series of studies to further
explore the experiences of breathlessness among
patients with different conditions (lung cancer, COPD,
cardiac failure, MND) and in different care settings.
Gysels has completed interviews with patients and
carers in all groups, and Bausewein is investigating for
her PhD, the experience of breathlessness over time and
the effectiveness of a hand-held fan in the home. Here a
pragmatic trial is embedded as part of the longitudinal
component where patients are randomised either to the
use of a handheld fan or a wristband. As an initial phase,
we have completed a systematic literature review to
identify the appropriate measures for the trial 317 . For her
Fatigue
Itching
Drowsiness
Feeling anxious
Dyspnoea
Swelling arms or legs
Pain
Muscle cramps
Dry mouth
Restless legs
Lack of appetite
Dry skin
Difficulty concentrating
Difficulty sleeping
Constipation
Dizziness
Muscle soreness
Nausea
0% 20% 40% 60% 80% 100%
quite a lot / very much
a little / somewhat
none
missing data
Figure 2.6 Symptom prevalence at first symptom assessment in patients (N=65) with conservatively managed end-stage renal disease
Source: Murtagh et al, Journal of Pain & Palliative Care Pharmacotherapy, 2007 In press
12

PhD, Malik is exploring the experiences of caregivers,
and how patient symptoms and care affects them, with
a particular focus on sleep.
Evaluation of a new breathlessness intervention
service in Cambridge
One specific new intervention for Breathlessness is
being tested with Addenbrooke’s NHS Trust, Cambridge,
UK. The Breathlessness Intervention Service (BIS) is a
service for patients with intractable breathlessness
(regardless of their diagnostic group) and their carers,
located within the Palliative Care Team. The evaluation
follows the MRC’s framework for the evaluation of
complex interventions, see section 2.1.7.
pilot pragmatic fast-track (delayed intervention)
randomised controlled trial of the service with COPD
patients (see In Focus 2.1). The trial uses a mixed
methodology including clinical outcomes, quantitative
measures and qualitative elements to explore the impact
of the intervention (patient experience) and its outcome
on patients’ quality of life. Uniquely among evaluations
of breathlessness services to date, carer outcomes and
the views of staff and referring agencies are also being
collected. The pilot trial is providing the opportunity to:
(1) examine the acceptability of a fast-track RCT
methodology with breathless patients in a palliative care
setting; (2) test the protocol and randomisation strategy;
and (3) assess the acceptability and suitability of the
Booth and Higginson, after winning support from the
Gatsby Charitable Foundation, conducted Phase I (the
modelling phase) consisted of a qualitative study of
service users and audit of breathlessness management
locally. This built on a Pre-Clinical (theoretical) phase –
which showed that lung cancer and COPD patients
found breathlessness a frightening, disabling and
restricting condition. Carers also reported severe anxiety
and helplessness and felt powerless. Existing services
were highly valued, but were described as inconsistent
and sporadic 212 .
In Phase I the BIS service was commenced and
Farquhar conducted qualitative interviews with patients
(n=10) and carers (n=9) using it, GPs (as referrers, n=4),
respiratory nurses (as referrers, n=2) and BIS staff
themselves (n=2). Patients and carers valued BIS;
positive aspects included: its positive, educational
approach which emphasised what was possible (not
what lost); non-pharmacological strategies which were
described as helpful and new; and the open access to
advice and flexibility of BIS, which was especially helpful
when patients were frightened. However, some aspects
required development, including carers’ need for more
support and information; the problem of the historical
location of BIS within oncology; and the need for prior
information about BIS before patients were seen by the
service. In addition, referrers valued the educational role
and second opinion that BIS provided 212 .
various outcome measures for both patients and carers
before a formal Phase III trial of all patients referred to
the service (regardless of diagnostic group) commences.
2.2.5 Managing Symptoms in Complex Neurological
Disability
The Regional Rehabilitation Unit at Northwick Park
provides in-patient rehabilitation for younger adults with
complex neurological disabilities whose needs for
rehabilitation are beyond the scope of their local
services. The prompt management of symptoms such
as pain, depression and spasticity is key to the success
of rehabilitation in this group.
We have developed a series of integrated care
pathways (ICPs) which not only guide clinical
management, but also support systematic on-going
data collection to evaluate the success of our interventions.
As a first step we have focused on the
development and evaluation of tools for the
assessment of symptoms in patients with cognitive /
communication problems who have difficulty with
reporting their symptoms through the normal methods.
In this period, the ICPs have provided the following:
The results from phase I led to modification of BIS and in
Phase II (exploratory trial phase) we are conducting a
13

ICP for assessment and management
of hemiplegic shoulder pain:
• The ShoulderQ, which we have developed to assess
shoulder pain in this context, was shown to provide a
specific and sensitive assessment of response to
treatment 252 .
• The Scale of Pain Intensity (SPIN) was developed as
a simple and accessible tool for assessing pain in
people who are unable to complete the ShoulderQ.
Preliminary evaluation suggests that it has potential
for use in this context, and further evaluation is now
underway 234 . (see In Focus 2.2)
ICP for assessment and management of
depression:
• National clinical guidelines on the assessment and
management of depression in patients following
stroke and acquired brain injury have been modelled
on the ICP 189 .
ICP for the management of spasticity
• Our on-going evaluation of the functional benefits of
botulinum toxin in the management of spasticity was
a significant factor in the successful achievement of
a UK licence for its use in the management of upper
limb spasticity 5 .
• Our first successful use of goal attainment scaling
(GAS) to measure meaningful change in this context
is now being taken up in other studies 209 .
• The Depression Intensity Scale Circles (DISCs) is an
equivalent scale to the SPIN. Evaluation using the ICP
showed it to provide a valid and reliable assessment
of depression in the context of brain injury
(see In Focus) 164 .
In focus 2.2
Assessment Of Pain & Depression
Assessing symptoms in people with cognitive
and communication problems:
A novel approach to a difficult problem
Assessing symptoms is essential for the successful
management of medical conditions. However, people
with cognitive or communication problems, for example
due to acquired brain injury, confusion or other severe
illness, may have difficulty in using traditional measures.
As visual cues may help communication, we have
developed and evaluated a pictorial measure that can
help patients report on their symptoms.
This work has been carried out in the context of
developing Integrated Care Pathways (ICPs) for the
management of depression and pain respectively, in
which regular symptom assessment plays an integral part.
The Depression Intensity Scale Circles (DISCs)
The concept of increasing depression is represented by
a sequence of five dark grey circles increasing in size.
The mode of administration is adapted to suit the
individual’s cognitive and communicative abilities. Their
ability to make reliable ‘yes/no’ responses is established
using a screening questionnaire, the AbilityQ, and is
followed by a verbal explanation of the scale reinforced
by gesture or pictures as appropriate.
The DISCs has been shown to have acceptable
convergent validity, reliability and responsiveness as a
simple graded tool for the screening and assessment of
depression in patients with complex disabilities following
acquired brain injury and is now one of the
recommended tools for assessing depression in the
Royal College of Physicians guidelines for depression
following brain injury 164 .
The Scale of Pain Intensity (SPIN)
The SPIN uses the same idea as the DISCs, except that
the circles are coloured red to convey the concept of
pain. To reinforce its meaning, the colour red is also
used on separate body drawings to indicate the region
of the body where pain may be a problem.
A preliminary study to validate
the SPIN in a general
population with pain has
found that it could quantify
pain as well as the current
preferred tool, a 0-10 numeric
rating scale. Subsequent
observation of verbal and
non-verbal interaction
between speech and
language therapists and
patients with severe
dysphasia, together with the
experience of clinicians in
using the SPIN, has informed
its administration 280;234 . This
tool is now an integral part of
the multidisciplinary ICP for
managing shoulder pain in
stroke patients in daily use on
our regional rehabilitation unit.
Figure 2.7 The Depression
Intensity Scale Circles (DISCs)
Most severe
Depression
No Depression
14
14

2.3
Measuring Outcomes
Palliative care and rehabilitation are relatively new fields,
and evaluations have been weakened by inappropriate
or insensitive measures of benefit, such as the outcome
of care and quality of life. To evaluate or set standards of
care, or to assess need, we need appropriate tools to
measure quality of life, outcomes and evidence about
the most cost-effective models.
The department has led the development of measures in
palliative care, principally: the Palliative Outcome Scale
(POS) and the earlier Support Team Assessment
Schedule (STAS), with a programme building on 20 years
experience in outcome measurement and assessment.
Outcome measurement is also important in rehabilitation.
Since 1995, Professor Turner-Stokes has
spearheaded a drive to develop common language
outcome measurement for brain injury rehabilitation in
the UK. A common strand for much of the recent work is
the development of outcome measures with which to
assess the effectiveness of rehabilitation interventions,
and exploration of the relationship between different
measures in current use in the UK.
2.3.1 Patient Centred Palliative Outcome Scales
Support Team Assessment Schedule (STAS)
The Support Team Assessment Schedule (STAS) was
developed by Higginson when based at University
College London. The psychometric testing was presented
in her PhD thesis. It is a unique tool that assesses the
clinical outcomes and intermediate outcomes of palliative
care. Before STAS was developed there was no standard
reliable, valid and responsive measure to assess palliative
care: most existing measures had floor effects and did not
reflect palliative care goals. STAS can be used in studies
to compare palliative care services or in clinical audit. It
has nine core or up to 20 optional items covering physical,
psychosocial, spiritual, communication, planning, family
concerns and service aspects. Although POS has
replaced some aspects of STAS, there are elements of the
original STAS, e.g. communication, insight, and professional
education, which remain solely part of STAS. It is
still used in many studies. This results in many services
continuing to use STAS, with over 118 users in 17
countries. Further details are in Clinical Audit in Palliative
Care (ed. Higginson I) published by Radcliffe Medical
Press. You can download a copy of STAS from the
Questionnaires & tools section of www.kcl.ac.uk/palliative.
Palliative Outcome Scale (POS)
The POS was devised following a systematic review of
outcome measures used in palliative care. This
concluded that there was a paucity of clinical questionnaires
that could adequately reflect the holistic nature of
palliative care (Hearn and Higginson, Pall Med
1997;11:71-72). The POS was, therefore, designed to
overcome some of the limitations associated with
existing outcome measurement scales in palliative care.
It evolved using a literature review of measures, work by
a multi-professional project group with individuals who
worked in different palliative care settings and a patient
representative. The POS was then piloted in hospice,
Total Registered (so far) 457
Europe
UK 288
Italy 5
Czech Republic 2
Portugal 2
Switzerland 2
Spain 2
Greece 1
France 1
Poland 2
Sweden 2
North America
USA 91
Canada 15
Mexico 1
Rest of the World
Australia 8
South Africa 6
New Zealand 4
Argentina 3
Brazil 3
Peoples Republic of China 3
Singapore 2
Hong Kong 2
Taiwan 1
Thailand 1
Puerto Rico 1
Malawi 1
Botswana 1
Republic of Korea 1
Uganda 1
Japan 1
Nigeria 1
Independent Validations/Translations of POS
UK – Stevens et al, Support Cancer Care 2005;13:1027-34
Italian
German – Bausewein et al JPSM 2005;30:51-62
Urdu
Spanish – Serra-Prat et al Med Clin (Barc) 2004;123:406-12
Portuguese
Table 2.2 Palliative Care Outcome Scale (POS)
home, hospital and other community settings. The
questionnaire covers physical symptoms, psychological
symptoms, spiritual considerations, practical concerns,
emotional concerns and psychosocial needs.
Importantly, it also has an open question so
respondents can identify their most important concern.
There are two main versions of the POS questionnaire,
one for patients to complete, the other for staff. Bringing
together these two complementary perspectives allows
15

the POS to identify patient's problems and enables staff
to provide individualised care. It is a flexible tool, the
usage of which can be determined by the needs of local
services. A version completed by the family/caregiver
has also been developed.
The POS showed acceptable validity when used in a
variety of settings, such as home care, hospice inpatient
and day care, and hospital inpatient care, as well as
outpatient and community services. It has also been
shown to be a credible, clinical, research and audit tool,
which is acceptable to both patients and staff and quick
(five minutes) to complete (Hearn and Higginson Quality
in Healthcare 1999;8:219-277). The POS can be used
routinely to guide clinical practice and monitor service
interventions. Moreover, the POS is a valuable audit tool
that can help meet the current statutory requirements on
clinical governance. You can download free copies of
the POS questionnaires from the Questionnaires & tools
section of our website (www.kcl.ac.uk/palliative). A
user's guide to the POS with further details on the
origins of the POS, as well as suggestions for its
implementation in clinical practice and analysis of data
is also available. Table 2.2 shows details of current users
of POS, and external validations which independently
confirm the value of POS assessment and
measurement. A next step with the POS is to test: its
utility in identifying patients who would benefit from
referral to palliative care and potential to assess
complexity and costs using a similar approach to
rehabilitation measures (see 2.3.3); culturally appropriate
formats; and additional modules assessing symptoms or
other aspects in more detail.
Comparison of quality of life scales in
palliative care
Using data collected on 140 patients to evaluate
palliative day care we further explored the factors within
the Palliative Outcome Scale (POS) and other measures
of hope and quality of life. Using these different tools, we
were able to identify a relative factorial structure of all
scales combined. Four components appeared to be
reflected in the different measures – self sufficiency,
positivity, symptoms and spiritual needs. The results
suggest ways in which items within the POS might be
further improved, and suggests that the POS could form
the basis of a measure in the future containing 11 (rather
than 10) items which would explain the variability of
needs within patients and might be useful for identifying
individuals for referral to palliative care 16 .
The German translation of POS
The German version of the POS was translated forward
and backward according to EORTC recommendations
for translation procedures and then validated in palliative
care (hospital support team, hospice, home care) and a
pain clinic. The German POS version was well accepted
by patients and staff, and appears to be valid. The study
identified some areas where the scale would benefit
from expansion to more closely capture staff and patient
concerns 132 .
The APCA African POS
This collaboration between the African Palliative Care
Association (APCA), KCL and National Hospice and
Palliative Care Organisation (NHPCO) (USA), along with
partner agencies in 11 sites across South Africa, has
developed and begun the validation of an African
Palliative Outcome Scale (POS) for use across the
region. This important collaboration will enable future
evaluative efforts to be conducted using a valid outcome
tool, something missing to date. Work is currently
underway to develop an African POS for children.
Funded by the BIG Lottery in the UK, The Encompass
Project (Ensuring Core Outcomes and Measuring
Palliation in Sub-Saharan Africa) unites five sites across
ENCOMPASS
Ensuring Core Outcomes and Measuring
Palliation in Sub-Saharan Africa
South Africa and Uganda: The Hospice Association of
the Western Cape, Philanjalo Hospice in Tugela Ferry,
South Coast Hospice, The N’Doro project at Chris Hani
Baragwanath Hospital in SOWETO, and Hospice Africa
Uganda. The project aims to complete validation of the
African APCA POS and to work with the partners above
to act as “model” audit centres, conducting a full audit
cycle during the second year. This project has achieved
a number of successes: the recruitment and training of a
cadre of African palliative care nurses; the generation of
a large original dataset; and has laid the foundation for
audit in these new services. Harding, Selman and
Higginson are now planning the analysis of the data, so
it can be fed back to services, and the utility of this new
version of POS can be tested.
2.3.2 Common Language Outcome Measures
for Rehabilitation in the UK
In the last triennial report we described the tools we
have developed to measure outcomes from rehabilitation
and provide a common language with which to
compare different populations, programmes and
practices. These include the Northwick Park
Dependency and Care needs assessment (NPDS/
NPCNA) and the UK Functional Assessment Measure
(UK FIM+FAM). A recent survey has demonstrated that
these are now widely taken up and used in clinical
practice in rehab units across the UK 248 .
The NPDA/NPCNA provides a generic measure of care
needs in the community and thus the cost of continuing
care provided by health and social services. Work is
ongoing to develop hospital versions of these scales (the
NPDS-H and NPRNA) which could ultimately be used to
determine the nursing staff required for a rehabilitation
16

ENCOMPASS partners – palliative care research nurses in Sub-Saharan Africa
ward, adjusted in relation to case-mix 363;364 ; and also to
develop an equivalent scale for assessment of needs for
therapy input – the Northwick Park Therapy Dependency
Assessment (NPTDA) 276 .
In her capacity as national lead for the development
of Healthcare Resource Groups for Rehabilitation,
Professor Turner-Stokes is currently working in
collaboration with the Department of Health through
The Information Centre, Connecting for Health and
the Payment by Results Team to develop suitable
tools for banding cost tariffs for rehabilitation when
Payment by Results is introduced for rehabilitation
services.
The NPDS and NPTDA have been put forward as the
tools likely to be used for costing rehabilitation
inputs for patients with complex rehabilitation needs.
A much simpler tool, the Rehabilitation Complexity
Scale (RCS) has been developed for use at the less
specialised end of the service spectrum.
See figure 2.8.
Measuring function outcome from focal interventions
such as the use of botulinum toxin for
upper limb spasticity
Intramuscular injection of botulinum toxin is increasingly
recognised as a safe and effective intervention for
reducing spasticity in the arm and hand due to stroke or
other brain injury. However, whilst there is good
evidence for its effect on muscle tone, it is harder to
demonstrate that this translates into actual benefit for
patients. Focal changes that arise form the localised
injection of one or two muscles may be lost against a
background of unchanging items in the commonly used
disability measures.
Pooling data on stroke patients in two randomised
controlled trials of intra-muscular botulinum toxin (BTX),
Wade, Turner-Stokes and colleagues showed that it was
possible to demonstrate a relationship between changes in
spasticity and functional gain. However, functional benefits
were often not observed until 6-8 weeks after relieving
spasticity, due to the time needed to practice functional
skills. These functional gains may therefore be missed in
trials which use a single time-point for assessment of
outcome based on maximal effect on spasticity 5 .
A second reason for failure to demonstrate functional
gain is because measurement tools evaluate the wrong
(NPDS = Northwick Park nursing Dependency Scale, NPTDA = Northwick Park Therapy Dependency Assessment; RCS = Rehabilitation Complexity Scale)
Complexity of need
Costing tools
NPDS
NPTDA
RCS
Complex Specialised
Rehabilitation (CSR) –
tertiary services
}
District Specialised
Rehabilitation (DSR)
Areas covered
by proposed
HRGS
Local General
Rehabilitation (LGR)
Patients requiring rehabilitation
Figure 2.8 Current proposals for use of costing tools to develop banded cost tariffs for rehabilitation services under payment by results:
Source: Turner-Stokes et al, Clinical Medicine, 2007, in press
17

tasks. Some patients, especially early in the recovery
phase, may expect to regain voluntary control of their
arm and hand following relief of spasticity, but for more
severe and longer-standing paralysis, the goals for
intervention tend to be ‘passive function’ such as
improving the ease of caring for the person – for
example making it easier to maintain hygiene or to put
the arm through a sleeve while dressing. A systematic
review of the literature revealed no suitable tools
currently available for measuring both passive and active
functions of the upper limb that would properly assess
the functional benefits of managing upper limb
spasticity, so we have developed a new tool called the
ArMA, which is now undergoing evaluation.
Patient-centred outcomes in rehabilitation - the
use of Goal Attainment Scaling (GAS)
Goal attainment scaling (GAS) was first introduced in the
1960s as a tool for evaluating individualised outcomes in
complex interventions in patients with learning disabilities,
but it has only relatively recently gained popularity
outside in other fields. One of the major challenges for
outcome measurement in rehabilitation is the wide
variety of different goals that patients may have for their
rehabilitation programme. GAS absorbs much of this
variation within the process of goal setting, making it a
potentially valuable tool for this context. Moreover, a
patient-centred instrument that specifically evaluates the
outcomes that are important to the patient and their
family provides an important perspective that is not
included in most standardised measures of outcome.
In our preliminary application of GAS as a measure for
assessing focal changes during the management of
upper limb spasticity (see above) Ashford and Turner-
Stokes found that GAS provided a useful measure of
functional gains in response to treatment, and was more
sensitive than global measures such as the Barthel
Index 208 . Further work is underway to address the
benefits of GAS over currently applied standardised
outcome measures in our wider rehabilitation
programme.
18

2.4
Living & Dying
in Society
2.4.1 A Good Death at Home: Committed
to Making it an Achievable Goal
Most people in many countries of the world do not die
where they wish. The latest data for England & Wales
shows that nearly 300,000 people died in NHS hospitals
and less than 94,000 at home. This project, now funded
by Cicely Saunders International, aims to improve the
evidence base on how best to support patients and
families to achieve a good death at home if they wish.
Over the last 12 years, Higginson inaugurated a series of
studies scrutinising variations in place of death, the
preferences of patients, families and general public, the
effect of services and the reality for specific groups of
people (e.g. children and young people, the elderly).
Through international collaborations including with the
US, Italy and Ireland, our team investigated differences
and commonalities across countries. We found, for
example, that death demographics and the place where
people die are similar in London and New York 220 . In
London, however, older people are much less likely to
die at home, whereas in New York they die at home
more often than their younger counterparts.
Percent of Cancer Deaths at Home Ages 40+, 1995-1998
.3%
London
New York City
.25
.2%
.15
.1%
.05
0%
40 42 44 46 480
50 52 54 56 58 60 62 64 66 68 70 72 74 76 78 80 82 84 86 88 90 92 94
Age
Figure 2.9 Proportions of cancer deaths at home, 1995-1998 by age in London and New York
Source: Higginson and Decker, 2006, European Journal of Public Health 2006:doi:10.1093/eurpub/ckl243
Factors related to illness
Individual factors
Environmental factors
Non–solid tumours
Long length of disease
Low functional status
HOSPITAL
HOME
HOME
Demographic variables
Good social conditions
Ethnic minorities
Personal variables
Patient’s preferences
HOME
HOSPITAL
HOME
Healthcare input
Use of home care
HOME
Intensity of home care HOME
Availability of inpatient beds HOSPITAL
Previous admission to hospital HOSPITAL
Rural environment
HOME
Areas with greater hospital
provision
HOSPITAL
Social support
Living with relatives
Extended family support
Being married
Caregiver’s preferences
HOME
HOME
HOME
HOME
Place of death
Macrosocial factors
Historical trends
HOME
Figure 2.10 Model of variations in place of death
Source: Gomes and Higginson, BMJ, 2006, 332:515-521
19

In the attempt to find out what needs to be in place for
patients to die at home, Gomes and Higginson analysed
58 studies, involving 1.5 million patients in 13 countries.
They identified strong evidence for the effect of a
complicated network of 17 factors associated with death
at home 226 . The findings, depicted in an evidence-based
model (figure 2.10), were welcomed by many policy
makers and professionals committed to planning and
providing care that meets patients’ wishes.
The team has taken this research further to understand
and monitor changes in where people die over time. We
unveiled a longstanding dying trend away from home in
England & Wales from 1974 to 2003, that has sustained
for cancer and non-cancer, both genders and all people
aged 45 and over. Concerned by the implications of a
continuation of this trend into the future, a series of
national long-term projections are being prepared
accounting for different scenarios. The data from this
study will be of great value to plan for future palliative
care. Gomes and Higginson then plan to research ways
to improve the quality of palliative care at home to
discover more cost-effective models of home care so
that more people feel supported and can benefit from it.
Figure 2.11 Distribution of ABI carer participants
within UK Strategic Health Authorities
Numbers of carers
10
5
1
2.4.2 Carer Experiences in Long-term Neurological
Conditions
The health and happiness of family carers who look after
people with long-term neurological conditions can be
put at risk because many of those cared for have
multiple problems affecting their functioning in all
aspects of daily life and need round-the-clock care.
The Government’s National Service Framework (NSF) for
Long-Term Conditions (2005) set out specific initiatives
to transform the way that health and social care services
support these family carers. To inform its implementation,
Jackson and Turner-Stokes have conducted a
Department of Health funded programme of research
into carer experiences in neurological conditions.
In collaboration with researchers from the Social Policy
Research Unit at York University, the Institute of
Psychiatry and voluntary organisations, they completed
a national survey of the needs and experiences of carers
of adults with acquired brain injury (ABI) (figure 2.11).
This comprised:
• Systematic literature reviews of the sociological,
medical and psychological literature.
• A national questionnaire study, which compared and
contrasted the experiences of carers looking after a
relative of working age with ABI against a group of
carers of people with dementia studied previously.
Results showed that high levels of burden, a diminished
quality-of-life and poor health were common in both
carer groups (figure 2.12). ABI carers fared worse than
dementia carers, probably because more of them lived
with the person cared for and because they spent more
hours caring per week.
Figure 2.12 WHOQoL-BREF quality of life scores compared for ABI carers, dementia carers and a normative sample
100
90
80
Mean Quality of Life Scores
70
60
50
40
30
20
10
0
Physical Psycological Social Environmental
ABI carers (n+222) Dementia carers (n=132) Normative sample (n=396)
20

The problem behaviours shown by the person cared for
had different effects on carer well-being. Looking after
someone with aggressive problems was more of an
issue for ABI carers, whereas passive/low mood
problems caused more difficulty for dementia carers.
Having to cope with a relative displaying violent/
aggressive behaviour was of particular concern for
carers with young children or other dependent relatives.
As one mother told us…
“Constantly tired, haven’t got any available time to play
or do things with the children. Our relationship as
husband and wife has suffered because he cannot
understand there are others in the house and he can’t
have everything done immediately and starts screaming
and yelling at me and the children which is getting us all
down. Because of memory problems I have to do
everything over and over again. I can’t leave the children
with him and can’t leave him either.”
Support for carers with multiple caring roles
in the context of long-term neurological
conditions
As a result of this work, a further Department of Health
grant has been awarded for a follow-on study to
investigate the experiences of carers according to their
differential family circumstances, and the conditionspecific
problems they have to cope with, in a range of
other long-term neurological conditions. The aims of this
study are to:
• Investigate the support needs of people caring for an
adult with a long-term neurological condition,
especially those with other family dependents
(i.e. with multiple caring roles).
• Identify differences in support needs between caring
for people with ‘hidden’ (cognitive, behavioural,
emotional) versus ‘visible’ (physical) disabilities.
• Investigate carers’ changing needs during the first 1-2
years after onset.
• Estimate costs and identify predictors of both current
informal care & support and potential support.
Findings will inform a good practice guide, which will be
disseminated through major service providers in the
NHS and voluntary sector to assist in the planning of
appropriate support services for these carers, and to
evaluate the cost implications of service provision.
2.4.3 Ethnicity and Culture
One question raised about patients common preference
for home care and home death, is whether this varies by
culture. We explored this as part of a wider study
assessing the effects of advanced disease, particularly
cancer, among the local black Caribbean and white
populations. Bereaved relatives reported that 34% of
black Caribbean patients and 27% of white patients had
expressed a firm preference for location of death, and of
these in both groups more than 80% wanted to die at
home. Thus, at least in this group, home preference was
similar. However, fewer respondents representing
Caribbeans rather than white patients stated that they
(x 2 = 8.9, p= 0.01) nor the patients (x 2 = 8.6, p = 0.03)
where given sufficient choice about the actual location
of death, suggesting that further training and support is
needed to elicit the preferences of, and to meet the
needs of, the local Caribbean community 25 .
Further exploration of the experiences of the family
members also showed higher psychological morbidity
among the Caribbean individuals, highlighting an urgent
need for better focused support in primary care. The
comparison of the bereavement effects on family and
close friends of 50 deceased first generation black
Caribbean and 50 native born white patients, using
standardised scales, found that although there were no
differences in the intensity of grief; depression and
anxiety; was significantly higher among black Caribbean
respondents (28 vs 21.2, T test = -2.28, p = 0.025).
Multiple regression analysis revealed that this difference
was best accounted for by the ethnicity of the deceased
(OR 7.0, CI 0.08-13.14, p=0.03) and bereavement
concerns such as legal and housing problems (OR 5.0,
CI 0.07-9.37, p=0.02). The majority of respondents had
visited their General Practitioner subsequent to
bereavement suggesting this as a possible means of
support 156 .
Work in this area is progressing through a qualitative
study exploring and comparing the experience of living
with and dying from advanced cancer among the black
Caribbean and white British communities living in south
east London supported by the Guy’s and St Thomas’
Charity. The study is exploring differences in the
meaning of symptoms and mechanisms of support, in
order that this information can be used to improve future
treatment and care.
2.4.4 Better Palliative Care for Older People
The fastest growing section of the population is the
“oldest old” and this trend is forecast to continue, but
little research to date has focused on the needs,
attitudes or the experience of this group. As preventive
healthcare reduces disease-related death at a younger
age, more people can expect to die eventually in old
age, but data are scarce on the patterns of decline due
to age-related causes of death. Disability, frailty and
dementia are all increasingly common in advanced old
age, and there is evidence of steeper cognitive decline
preceding death.
Although many of the studies reported elsewhere
include partially, or often primarily older people (for
example, research into renal palliative care 2.2.2), we
have launched a specific programme seeking to improve
palliative care for older people, supported by the Dunhill
Medical Trust and Cicely Saunders International. Within
this, three main sub-programmes have been developed:
I. Supporting dignity at the end of life
A systematic review of older peoples’ perceptions of
dignity and interventions to support their dignity and a
qualitative study to explore residents’ perceptions of
dignity are underway. Pilot studies to assess the
feasibility, acceptability effectiveness of a novel
dignity therapy intervention for older people at the
end-of-life are planned in collaboration with Professor
Harvey Chochinov, Canada, who pioneered this
approach. These will be conducted in two settings:
care homes and hospital (people being seen by a
hospital-based palliative care team).
II. The effectiveness of interventions to improve
palliative care for older people
This includes (a) a systematic review to assess the
21

effectiveness of palliative care interventions for older
people in care homes, and (b) producing a booklet for
the WHO on better practice in palliative care for older
people, with additional support from the international
charity, Fondazione Maruzza Lefebvre D’Ovidio
Onlus.
III. Exploring the barriers to implementing the Gold
Standards Framework for Care Homes
The Gold Standards Framework for Care Homes is
one of the UK's national tools to improve end-of-life
care, which has been developed and recognised
nationally through the Department of Health’s End of
Life Care Programme. Interviews with care home
managers, nursing staff, care assistants, residents
and their families are planned, in research supported
by the Guy’s and St Thomas’s Charity.
Dr Sue Hall (Lecturer) and Susan Longhurst (Research
Associate) have been supported to work with Irene
Higginson on the programme.
In addition, Dr Morag Farquhar is providing a link and
collaboration to the study on living and dying in extreme
old age. This qualitative and quantitative study, from the
Department of Public Health and Primary Care,
University of Cambridge, and supported by the BUPA
Foundation, aims to gain a fuller understanding of what
it means to live so long and die so old.
The long-running study of ageing, the Cambridge City
over-75s Cohort, provides a unique opportunity to
explore these issues by re-interviewing the survivors
(now all aged 94-100), their family and other carers. The
research takes account of personal experiences,
attitudes and preferences using qualitative methods,
and quantifies patterns of health, cognition, social
networks and service support at the end of life, building
on 20 years’ quantitative data.
This BUPA Foundation funded study consists of three
linked projects to examine living and dying in extreme
old age within the framework of an on-going longitudinal
observational study, the Cambridge City over-75s
Cohort (baseline n=2609). King’s College London is a
co-applicant on this phase of the study, providing
expertise in qualitative methods, interviewing older
people and quality of life measurement.
22

3
Policy, Guidelines and
Needs Assessments
The work of the department has had a considerable
impact on policy, through the National Institute of
Clinical Excellence (NICE) Guidance on Supportive and
Palliative Care in Cancer, and through its general
research being adopted in policy documents. In
addition, work was undertaken by Turner-Stokes and
colleagues on the National Service Framework for Long
Term Neurological conditions. Many of the members of
the department are members of local, national and
international strategic groups, further aiding the
development of the fields (see section 7).
As Deputy Chair of the External Reference Group and as
Chair of the Research and Evidence group, Professor
Turner-Stokes played a key role in its development.
Gathering the evidence to underpin the NSF recommendations
was a major undertaking. As part of this, the
group developed a new research typology that is quick
and simple enough to be used by clinicians;
encompasses both qualitative and quantitative research,
providing it is rigorously conducted; and values the
experience of users and carers who live with long term
neurological conditions as well as research-based
evidence 285 . Application of this typology allows different
conclusions to be drawn from the literature than the much
more restrictive approach of the Cochrane Review
methodology, which may resonate more closely with the
experience of users, carers and professionals in the field.
3.1 Guidelines
Professor Turner-Stokes chairs the Research and
Clinical Standards Committee for the British Society of
Rehabilitation Medicine and is also editor of the Concise
Guidance series for the Royal College of Physicians.
As part of this, guidelines have been produced in the
following areas:
3.2.1 Epidemiological Based Needs Assessment
For the Open Society Institute we have conducted a
global needs review collating all the data on all the
different approaches to needs assessment which have
been conducted across the globe, and are in the
process of analysing this 326 .
In addition, for a local hospice Longhurst, Shipman and
Higginson conducted a needs review to assess how the
local community and hospice would like to see that
hospice develop in response to local need and available
resources. This involved collating epidemiological data,
interviewing relevant stakeholders, including patients,
local doctors and nurses, the primary care trusts and,
of course, hospice staff.
3.2.2 Individual Based Needs Assessments
Many of the measures described in section 2.2 are being
used to assess needs. For example, many services
across the globe are using POS to assess patient needs
and to aid communication between staff. The Ministry of
Health in Portugal has recommended it for all services,
and in the UK it is proposed in End-of-Life and Palliative
Care Guidance. In addition, Williams and Turner-Stokes
have been developing the Northwick Park Nursing
Dependency Care Needs Assessment (NPDS/NPCNA).
While this assessment was designed to work in the
community a preliminary evaluation of care hours
demonstrated that the NPCNA over-estimated the time
required to deliver nursing care in hospital when it was
compared with the total nursing and care hours
available. In addition, it failed to identify specialised
interventions in a rehabilitation setting. The work will
lead us to seek ways to improve and find the
assessment tool for the future.
• Vocational assessment and rehabilitation following
acquired brain injury 73 ;
• Rehabilitation following acquired brain injury 85 ;
• Assessment and management of the use of
anti-depressants following acquired brain injury 189 ;
• Chronic kidney disease (Burden and Thompson,
Clinical Medicine 2005;5:635-642);
• Management of delirium in older people (George et al,
Royal College of Physicians 2005 London).
In addition, Cochrane reviews have been undertaken
and the methodology developed (see In Focus 3.1).
3.2 Needs Assessments
The department is active in both epidemiologically/
population based needs assessments to improve care
for the community and also individual patient needs
assessments, adapting many of its existing measures.
23

In focus 3.1 –
Cochrane Reviews
The Cochrane library was set up in the 1980s to provide
a database of randomised controlled clinical trial
evidence which is regularly reviewed and updated.
Whilst RCTs may not always be possible, or even
appropriate, to answer all the questions that need to be
answered, Cochrane reviews form an important contribution
of the literature.
In rehabilitation, the major part of our Cochrane
programme has been undertaken in collaboration with
colleagues in Melbourne, Australia – Dr Fary Khan and
Professor Peter Disler, who is an honorary Visiting
Professor within our department. During this three-year
period we have completed four Cochrane systematic
reviews:
• Exercise for peripheral neuropathy 35
• Multi-disciplinary rehabilitation for acquired brain
injury in adults of working age 165 .
• Multidisciplinary rehabilitation for adults with
multiple sclerosis 327 .
• Rehabilitation interventions for footdrop in
neuromuscular disease 336 .
The two reviews of multidisciplinary rehabilitation for
Acquired Brain Injury (ABI) and for MS were large
systematic reviews incorporating 14 and eight trials
respectively. Pooling of data for meta-analysis was
prohibited by heterogeneity in the trial methods, but
both reviews used a novel ‘synthesis of best evidence’ to
assimilate the trial findings.
• The ABI review provided strong evidence that patients
with moderate to severe brain injuries recover faster
with more intensive rehabilitation programmes, and
that continued out-patient rehabilitation can help to
maintain these gains.
• The MS review also showed strong evidence that
patients with MS can benefit from an inpatient
programme, and can function better, even though
their underlying impairments do not change. Also that
out-patient and community-based programmes can
improve quality of life.
Cochrane reviews are also underway to assess:
• The effectiveness of non-pharmacological interventions
in the management of breathlessness.
• The effectiveness of antidepressants in the
management of depression in physical illness
(Hotopf et al).
4
Clinical Services
There are well established clinical palliative care services
at both King’s College Hospital NHS Trust (KCH, one
hospital palliative care team) and at the Guy’s Foundation
and St Thomas’ NHS Foundation Trust (GST, two hospital
palliative care teams and two community palliative care
teams). The services provide a seven day a week visiting
service and consultant-delivered integrated 24-hour
telephone advice across both Trusts and the University
Hospital Lewisham.
Two of the clinical consultants have honorary academic
contracts with the Department of Palliative Care, Policy and
Rehabilitation – Dr Polly Edmonds (lead clinician at KCH)
and Dr Rachel Burman (KCH) and of course Professor
Higginson is a consultant (honorary), primarily for KCH, but
in on call integrated across all units. There are joint monthly
clinical update meetings between the KCH palliative care
team and academics from the Department of Palliative
Care, Policy and Rehabilitation, in order to share key
clinical issues, especially where they relate to policy and to
update on research projects, and a joint journal club. The
clinical services lead the delivery of the undergraduate
curriculum – this is discussed more fully in section 5.4.
4.1 Improving Care for People Affected by
Multiple Sclerosis (MS): Translation of Study
Outcomes to the Clinical Setting
During its evaluation phase the new MS service saw 94
patients, assessed by the referrer to be severely affected
by their MS. Most of the people referred for assessment
of symptom control problems had other specialist
palliative care issues identified on assessment by the
clinical service. This was less likely where referrals were
made for other reasons. No patient required more than
three visits by the clinical team, and only a minority of
people (n=15, 16%) were subsequently referred on to
community specialist palliative care services for ongoing
management.
Drawing on the lessons learned as part of this project,
and following a detailed option appraisal, it was decided
that the most realistic and sustainable option for the
future was that of a step-down service leading to full
integration of the MS palliative care service with the
generic King’s College Hospital Palliative Care Team. In
addition, a new referral pathway was developed (see
figure 4.1).
There are many examples where the research findings are
influencing local, national and international clinical
practice, but two specific local examples are given below.
24

Pathway for Referral of Person Severely Affected by MS To Specialist Palliative Care
Core Indicators
• Recent, significant functional decline (loss of ADLs)
• Dependence in ADLs or more
• Multiple co–morbidities
• Weight loss
• Serum albumin 2
• Kamofsky score 0
• Severe progression of disease over recent months
• Recent increase in infective episodes requiring hospitalisation
Consider holistic assessment using palliative care approach having regard to
• Quality of life • Comfort • Patient Choice
Disease specific indicators
Significant
complex
symptoms e.g.
pain
Communication
difficulties e.g.
Dysarthria /-
fatigue
Cognitive
difficulties
Swallowing
difficulties/poor
nutritional status
Breathlessness
/- aspiration
Medical
complication e.g.
recurrent infection
Ability to access
hospital based
review
Difficulty
verbalising choice
es
input from medical team, SLT, OT and dietician, physiotherapist or
neuropsychiatrist as appropriate
es
No
Suspect impaired
ability to make
decisions
Consider PEG
feeding tube
Consider active management e.g.
antibiotic and ventilation
Refer to MDT
including hospital
palliative care
No
Patient wants active management
es
Refer to
appropriate acute
service
No or not sure
Home assesment
for symptom
control
Advance directive
End of life
decisions
and future
management
Symptom
management
and future care
planning
Need for end of
life discussion /-
preferred place
of care
Consider Referral to specialist Palliative Care
Figure 4.1 Referral pathway arising from research and clinical collaboration
Where new referrals are received by the clinical service,
these are now triaged by one of the consultants in
Palliative Medicine at King’s College Hospital NHS Trust,
using the referral pathway based on the information
available. The consultant then contacts the referrer by
telephone to discuss the patient in more detail and give
appropriate telephone advice with a view to:
• Sign-posting patient to appropriate service(s);
• If palliative care issues are identified as urgent and
complex, the palliative care consultant facilitates
referral to local community palliative care team (CPCT);
• If it is difficult to engage the local CPCT or other
professionals, the palliative care consultant could
offer a joint patient assessment either with the CPCT,
referrer, or other appropriate health or social care
professional;
• For one local area (Lambeth, Southwark and
Lewisham) patients there is the option of an
appointment in the neurology palliative care clinic.
New patients may also be seen by the hospital palliative
care team in the new complex MS patient clinic that is
held monthly at King’s College Hospital NHS Trust, led
by Dr Peter Brex.
A further outcome from the project is the development
of several resources to support people severely affected
by MS, carers, health and social care professionals in
learning from this project and developing local collaborations
to improve care for those people with MS that
are severely affected. These are:
• A Resource for Health and Social Care Professionals;
• MS Essentials series: Support for people severely
affected by MS;
• A Service Directory listing statutory and voluntary
services in Southeast London; it is available as a paper
version or via a website http://www.selmss.org.uk/.
4.2 Improving Care for People with Chronic
Heart Failure: Translation of Heart Failure Study
to Clinical Setting
This service development programme was designed to
review current cardiology/palliative provision at Guy’s
and St. Thomas’ NHS Foundation Trust for heart failure
patients and to measure need for and appropriateness
of a new service. Led by Beynon and Harding, and
involving a multi-professional academic and clinical
team, this study, which was funded by the Guy’s and St
Thomas’ Charitable Foundation, aimed to identify areas
of good practice and those where things worked less
well. In order to do this, we undertook a census with a
view to quantifying the number of inpatients likely to
require palliative care, as well as conducting interviews
with patients, their carers and staff in both palliative care
and cardiology.
The process of undertaking the research has led to an
increased understanding between the clinical leaders in
both cardiology and palliative care with a joint determination
to implement the data to provide an improved
service for patients nearing the end of their lives. Results
from the project have informed the local, national and
25

international debate, as well as leading to local service
recommendations.
The results from the project are currently being disseminated
within the hospital trust but have already led to:
• Agreed specific referral criteria to palliative care
(see table 4.1);
• A pilot parallel heart failure/palliative care
outpatient service;
• Discussions between ward staff and palliative
care staff regarding available resources;
• Review of psychological support to patients.
• Review of information available to patients
All cardiac patients being referred to the palliative care team must have:
• been reviewed by the Heart Failure team (x81012);
• know they have a diagnosis of heart failure;
• both patient and medical team must agree to the referral.
IN ADDITION one or more of the following merit referral:
• Symptomatic (e.g. breathless at rest or on minimal exertion) despite optimal treatment;
• Three or more admissions for heart failure within the past year;
• Heart failure when hospital admission may not be the best/only/preferred option;
• Stage IV patients (i.e. daily activities limited by dyspnoea) for whom hospice inpatient treatment may be
of benefit, either immediately or in the future;
• On optimal therapy but with marked or deteriorating physical or psychological symptoms*;
• Those who may benefit from palliative day care or counselling*.
* Where only psychological issues are present consider referral to psychology
These guidelines have been compiled from a one year study undertaken at Guy’s and St. Thomas’ Hospital in
collaboration with the Department of Palliative Care, Policy and Rehabilitation, Kings College London and St.
Christopher’s Hospice. The study was supported by the Guy’s and St. Thomas’ Charity.
Table 4.1: Referral criteria to Palliative Care at GSTT for patients with Heart Failure*
26

5
Education and Outreach
5.1 General Education: Seminars, Masterclasses
and Targeted Programmes
The department is active in providing a programme of
seminars and masterclasses as part of the COMPASS
collaborative (see section 7 for details). We have
undertaken a programme of masterclasses and open
seminars (see table 5.1).
Table 5.1 Open Seminars and COMPASS Collaborative Masterclasses 2004/5-2006/7
2004
Dr Sunny Kaul, UK
Non-invasive Ventilation in MND
Teresa Young, UK
The European Organisation for Research and
Treatment of Cancer - Approach to Quality of Life
Measures: Past, Present and Future
Dr Dan Munday, UK
Palliative Care Research at the Edge of Chaos –
looking through a complexity lens
Dr Peter Fayers, UK
Response Shift in Patients’ Reports of Quality of Life:
What is it, why it matters, and how to assess it
2005
Prof Derick Wade, UK
Do Biomedical Models of Illness Make for Good
Healthcare Systems?
Dr Bee Wee, UK
Investigating Death Rattle: lessons learnt about
research near the end of life
Prof Harvey Chochinov, Canada
Dying with Dignity: A contemporary challenge for end
of life care
Alicia O’Cathain, UK
Communicating Purpose and Practice in Mixed
Methods Studies
Dr Stephen Barclay, UK
Palliative Care in Primary Care: identifying and tracking
deaths at home – development of a national study
2006
Prof Derick Wade, UK
Getting Papers Published – how to avoid certain failure
Dr Sandra Decker, USA
Assessing Causality using Quasi-experiments
Dr Magi Sque, UK
Mixed Methods Research on Organ Donation
Prof Derick Wade, UK
Data, Data Everywhere but No Result in Sight
Dr Lewis Cohen, USA
Accusations of Euthanasia and Murder
in End of Life Care
Prof Alan Tennant, UK
The role of Rasch Analysis in Medical Outcome
Studies
Prof Peter Disler, Australia
Dimensions of Rehabilitation in Rural Australia
Dr Richard Harding, UK
Palliative Care in Sub-Saharan Africa – current
evidence and activity
Dr Stephen Barclay, UK
Perspectives on Place of Death in Primary Care
2007
Mandy Stratford, UK
Dying to be at Home: relatives’ perceptions of caring
for a loved one with advanced cancer
Prof Allan Kellehear, Australia
What is Health Promoting Palliative Care?
Dr Patrick White, UK
COPD and Palliative Care: does prognosis matter?
Prof Jennifer Abbey, Australia
The use of Photographs in Research with People with
Late-stage Dementia
Dr Wendy Magee
Music Theraphy in Neuropalliative Rehabilitation
Prof Amanda Ramirez
Delivery Cancer Care in Multidisciplinary Teams:
is it working?
27

A specific ‘Palliative care for people with MS’ (PwMS)
education programme was undertaken and evaluated,
delivering a programme accessible to health and social
care professionals working with PwMS across
Southeast London. Nine study half days were
undertaken and the education programme was formally
evaluated, with 182 out of 234 (77%) participants
describing each topic as quite or very useful.
5.2 MSc, Postgraduate Diploma and Postgraduate
Certificate in Palliative Care
The philosophy underpinning the MSc in Palliative Care
(and the new qualifications – the Postgraduate Diploma
and Postgraduate Certificate) is to enable participating
students to develop the skills required to appraise
research and evidence on palliative care-related issues
to inform their clinical practice and to develop relevant
services. The MSc in Palliative Care, run in collaboration
with St. Christopher’s Hospice and with the support of
many talented external lecturers, who are experts in
specific topics, is now very well established with a 10-
year track record of providing a high class academic
experience. It is distinctive from other national and
international postgraduate palliative care degree courses
in the following ways:
1. The MSc is focused strongly on evidence and
on understanding research relevant to palliative care.
This is because palliative care is a relatively new
specialty. Knowledge about which interventions have
the potential to enhance quality of life for patients and
their families, be they pharmacological, psychological,
social or service-based, are still poorly
understood or do not exist.
2. The course is inter-professional. This allows
students to explore similarities and differences in
roles, skills, knowledge and their respective
ideologies. It also provides scope for greater
opportunity of open communication of all members
within a group, consequently alleviating future
hesitancy of single disciplines sharing knowledge
with other professionals and non-professionals.
3. The MSc, Postgraduate Diploma and Postgraduate
Certificate courses are truly international. We
have always encouraged applicants from beyond the
UK because the different working experiences and
cultures students bring with them enhance the
entirety of the course. All students therefore learn
about each others’ different funding arrangements for
palliative care and related services, service configurations
and their respective challenges, interventions to
manage care, as well as the diversity.
Many students who have successfully completed the
course have gone on to achieve promotion within their
respective professions. Of these students a large
number have attributed their progression directly to the
course experience. For more detail about the perceived
added-value of the MSc in Palliative Care please refer to
the recent evaluation of the MSc published in the
Journal of Palliative Care 155 .
28

5.3 Successful MSc Alumni and their Research
Study Project Titles MSc Dissertations
2004-2007
2004
The effectiveness of the respiratory nurse specialists’
role for people with chronic obstructive pulmonary
disease: a systematic review
Judy Mulligan
An exploratory study of bereaved grandparents’
experience of losing a grandchild to a primary central
nervous system tumour
Mandy Reynolds
The timing of the do-not-attempt-resuscitation decision
for cancer patients in an acute oncology setting: how
early is too early, how late is too late?
Ann Muls
The management of depression and irritability and
aggression in people with Huntingdon's disease - a
systematic review of the literature
Rachel Taylor
The very old who die from cancer: epidemiology and
place of death in England and Wales (1995 - 1999)
Anna Lock
The impact of weight loss on body image in advanced
cancer
Ros Hinsley
What is the "pain" experienced by patients with heart
failure and is there a role for specialist palliative care?
Katherine Thompson
Loss of appetite in advanced cancer patients: a retrospective
study of the impact on the informal spousecarer
and their perception of intervention instigated by
health professionals
Ginette Pilkington
Palliative care needs at a district general hospital: the
view of patients, carers and health professionals. A
descriptive epidemiological survey
Joan Hester
Continuing care provision for palliative care patients
Stella Whitehouse
A pilot study to assess the effectiveness of palliative
care clinic in improving the quality of life for patients with
severe heart failure
Paul Paes
2005
A qualitative study on attitudes of nursing staff to
nursing patients with severe late Parkinson's disease
Phillip Jones
Attitudes of health care professionals to the palliative
care needs of people with end-stage dementia.
A pilot study.
Juliet Hately
The thoughts and concerns of young people with
advanced cancer: the barriers encountered in
conducting palliative care research
Katharine Williamson
Dying to be at home: relatives’ perceptions of caring for
a loved one or dependent with advanced cancer at
home - meta-ethnographic review of qualitative papers
Mandy Stratford
Drug interactions in palliative care: how much harm do
we do? The results from the palliative care unit in the
county hospital of St Gallen, Switzerland
Daniel Buche
Physicians' attitudes towards prognostication
Lotte Rogg
Palliative Care Outcome Scale (POS) - a pilot study in
Dover Park Hospice: is it applicable in the Singapore
setting?
Ee Wan Toh
A systematic review to assess the quality of the research
evidence investigating the effectiveness of palliative
radiotherapy in the control of ambulatory function in
patients with metastatic spinal cord compression.
Louise Armstrong
A study to investigate the use and experiences of
general practitioners of the palliative care services in the
Bromley PCT
Sabrina Bajwah
A qualitative investigation into health care professionals'
experiences of performing last offices and attitude
towards carrying out this procedure with family
members
Mary Macadie
Prospective randomised controlled trial: comparing
winged vialon cannula with soft-set cannula for
continuous subcutaneous infusion in palliative care
Rosemary Herbert
Is the Support Team Assessment Schedule (STAS) a
good choice as a clinical audit tool in the specialist
palliative care unit?
Liam O'Siorain
A systematic literature review to determine the effectiveness
of administering megestrol acetate to cachexicanorexic
patients with advanced non-hormone sensitive
cancer
Nicola Bland
Unmet needs in home palliative care: is there a role for
communication technologies?
Penny Carleton
Evaluating the effectiveness of a palliative care link nurse
system in an acute hospital
Annemieke Fox
29

2006
An exploration of palliative care nurses' decision-making
in the use of pro re nata (as needed) sedation
Pauline Ui Dhuibhir
Coping with loss. Do religious or spiritual beliefs
influence bereavement? A systematic review
Gerhild Becker
Specialist palliative care in the adult intensive care unit:
a multi-method project to investigate the need for
integrating a specialist service into the ICU of a heart
and lung hospital
Josephine Archer
Outcomes of palliative care in Sub-Saharan Africa -
initial steps in the development of an outcome measure
Karen Frame
Multi-Disciplinary perspectives of music therapy in adult
palliative care
Julian O'Kelly
Developing and testing a model of place of death in a
macro-analysis of the trends in home death
Barbara Gomes da Silva
A research study to explore how bereaved families
experience the use of cold bedrooms that enable their
child to remain at a children's hospice from the time of
their death up to the funeral
Lynne Forrester
A description of the implementation of NICE guidelines
on the palliative care of patients with chronic cardiac
failure: an exploratory study in a community Setting
Nigel Konzon
Efficacy of intranasal ketamine for the treatment of
breakthrough pain in patients with cancer pain: a
randomised double-blind, placebo-controlled, crossover
study
Birgit Haberland
Decision-making processes in adult Charedi Ashkenazi
patients with cancer; an interpretative phenomenological
analysis
Catharine Coleman
Complementary and alternative medicine (CAM) in
metastatic colorectal cancer patients receiving chemotherapy
Tanja Trarbach
A pilot study to determine the effectiveness of electroacupuncture
as an adjunctive treatment to control
neuropathic pain in patients with cancer and diabetes
Ollie Minton
2007
Interprofessional and inter-agency communication and
cooperation in an ambulatory and hospital concept of
palliative care provision for cancer patients in Germany -
a qualitative study of health care professionals’
perception
Sabine Bader
The use of clinical supervision by palliative medicine
consultants – a questionnaire survey
Chi-Chi Cheung
A survey of the attitudes and beliefs of patients
regarding cancer associated weight loss and weight
assessment
Simon Coulter
A systematic literature review to determine the analgesic
effectiveness of topical administration of opioids in the
palliative care setting – the role of case reports in
evidence based medicine.
Beata LeBon
How is the meaning of life articulated in palliative care
patients?
Natalia Lorenzo Garcia
Death and Dying in hospital – experiences of older
people and their families
Annelise Matthews
A pilot study using a multiple case study design to
evaluate the theory of dry wound management in
palliative care using the product Youki
Jane McManus
Exploring the palliative care knowledge and symptom
control skills of British Heart Foundation heart failure
nurses
Deborah O'Hanlon
Does education of palliative care professionals improve
confidence levels of health care assistants when caring
for dying patients and their families?
Jackie Aaron
The management of death rattle in dying cancer patients
Eleni Karatzia-Chrysostomou
Supportive and palliative care for adults with Cystic
Fibrosis - the perceptions of their bereaved parents
Kate Heaps
30

5.4 Undergraduate Education
The King’s College London School of Medicine, at
Guy’s, King’s and St Thomas’ Hospitals is one of the
largest medical providers of health care education in
Europe, with over 400 medical students in each year. Dr
Polly Edmonds and Dr Rachel Burman have led the
development of the undergraduate curriculum in
Palliative Medicine, with the course operating as a
vertical strand with teaching across the whole five years
of the curriculum. This integrated programme of
teaching provides students with a variety of experiences
from seminars, symposia, special study modules (SSMs)
and bedside clinical teaching to the hospice visits in
year five. Using a variety of teaching techniques in all of
the sessions, the course is always very well evaluated. It
provides a comprehensive coverage of the undergraduate
curriculum, which is unique for Palliative Medicine
both in its range and time allocated.
The most innovative aspects of the undergraduate
curriculum are the year five hospice visits and special
study module (SSM) opportunities. The final year
hospice visit, developed in partnership with St Christopher’s
Hospice, Trinity Hospice and Pilgrim’s Hospice in
Canterbury, is particularly well evaluated and gives the
students an opportunity to visit a hospice and meet
members of the multi-professional team, to gain an
understanding of how the work delivered in the hospice
differs from other health care settings. During the visit
students meet day centre patients as part of the highly
rated goldfish bowl session 77 . Other hospices involved in
these visits over the past three years include St
Michael’s Hospice in Hastings and The Martlet’s
Hospice in Brighton.
Four SSMs are offered in year four of the curriculum: the
management of pain in advanced cancer; the
management of anorexia and cachexia in advanced
cancer; the ethics of withdrawing and withholding
treatment in advanced cancer and a generic palliative
care SSM, delivered in conjunction with St Christopher’s
and Trinity Hospices. This SSM has been designed to
give interested students more detailed exposure to
palliative care by attending palliative care ward rounds
with the hospital palliative care team at King’s College
Hospital and spending two days at either Trinity Hospice
or St Christopher’s Hospice to experience inpatient
palliative care, community care and hospice day care.
This SSM is in its second year and has been well
evaluated by participating students.
In addition to the formal undergraduate curriculum,
elective placements have been undertaken for GKT and
overseas students at King’s (with the hospital palliative
care team and academic department), Trinity Hospice
and St Christopher’s Hospice.
Dr Edmonds is also deputy head of year 4 and the year 4
OSCE co-ordinator.
31

6
The Cicely Saunders
Institute of Palliative Care
The Department is working with Cicely Saunders
International, King's College London and associated
hospitals to establish the world’s first purpose built
institute of palliative care, a centre of excellence housing
research, education, information, support and clinical
care. The Cicely Saunders Institute of Palliative Care will
bring together academics, healthcare professionals,
community organisations, patients and carers in one
centre and will act as the hub for a network of international
research. By providing a comprehensive approach
to the physical, social and psychological needs of
people with progressive illness, the Institute’s research
will feed quickly and directly into practice and policy
around the world – improving palliative care and
enabling people to live better, with dignity and the least
possible suffering.
held a number of meetings involving local patient groups
such as Black Cancer Care, along with a user
involvement workshop. We hope that these activities will
ensure that patients and their carers can guide and
participate in our vision for the Institute.
Building plans are now well advanced. The first brick will
be laid in 2008, with completion of the building
anticipated in 2009. On the ground floor we will be
displaying some of the letters, photographs and books
of Dame Cicely Saunders which are held in the King’s
College London Specialist Archive at the Strand
campus. We are very grateful to the private individuals,
foundations and other donors who have contributed so
far to the project, including: The Garfield Weston
Foundation, The Wolfson Foundation, Macmillan Cancer
Support, Atlantic Philanthropies, PF Charitable Trust and
The Kirby Laing Foundation.
Cicely Saunders International is an international charity
created in 2002 by Dame Cicely Saunders, the founder of
the modern hospice movement. Cicely Saunders
International supports high-quality research and
education to improve the care and treatment of all people
with progressive illness, helping them to reach the end of
their lives with dignity and with the least possible
suffering see www.cicelysaundersfoundation.org.
The Institute will be a welcoming and peaceful
environment, sensitively designed in line with the principles
of palliative care and in consultation with potential groups,
patient groups and Macmillan Cancer Relief.
The 1,600 m² of floor space will provide:
• Office space for over 90 staff, including researchers,
clinical staff and several professors in palliative care,
rehabilitation and related disciplines.
• Teaching space, including seminar, tutorial and
workshop rooms and a lecture theatre.
• An information and support centre for patients, carers
and healthcare professionals.
• Space for clinical palliative care and cancer staff,
including offices, therapy rooms and clinical/
consultation rooms.
• A video conferencing suite for international lectures
and seminars.
It is essential that the planning of the Institute reflects
and serves the interests of patients and their carers.
To achieve this, and to ensure that patients and families
continue to contribute to our activities, we have
implemented a strategy for user involvement. We have
32

7
Research Collaborations,
External Committee
Work and International
Keynote Lectures
7.1 Collaborations
The department benefits from, and is part of, extensive
collaborations in research, teaching and clinical activity.
These are too many to mention, but some new major
collaborations are described.
COMPASS Collaboration
This collaborative was funded by the National Cancer
Research Institute (NCRI) in May 2006 for five years, with
the intention of developing collaborative research
projects, to submit for grant funding.
The COMPASS (COMPlex interventions: Assessment,
trialS and implementation of Services) Collaborative
seeks to:
• unite researchers from 12 UK universities, and more
than 65 affiliated individuals or organisations, and
• create a strong research grouping that can effectively
research the development, evaluation and implementation
of supportive and palliative interventions.
COMPASS is led jointly from three Universities: King’s
College London, University of Edinburgh and University
of Leeds. The collaborative and its work on interventions
span the whole trajectory of cancer care, from prediagnosis
to longevity or terminal care and bereavement.
The research has three main strands – assessment (led
by Higginson at King’s), interventions and implementation
(led by Ramirez, also at King’s). In addition there is a
Masterclass programme of seminars and capacity
building. The work on assessment links appropriately
with the existing expertise in outcome measurement.
European Palliative Care Research Collaborative
(EPCRC)
As part of a European collaborative, work is being taken
forward to improve the management of three symptoms.
Led by Professor Kaasa in Norway the group includes
experts in 10 centres across Europe. The research plan
of the EPCRC is based upon questions raised in the
clinic, with focus on cancer palliative care patients, thus
using a “true” translated approach. The research
focuses both on diagnosis and classification of these
symptoms and understanding of the underlying
mechanisms. To achieve the aims of EPCRC a multidisciplinary
approach was needed, bringing together basic
scientists and clinicians that will translate human
genome data into practical applications for these
patients. Assessment and classification of pain,
depression and cachexia (fatigue) are the basis for
diagnosis and subsequent treatment. By use of modern
methods of molecular biology the project seeks to
increase the understanding of the role of genetic
variability for pain and cachexia. European evidence
based internet guidelines will be developed by members
of the EPCRC supported by an international advisory
board. By recruiting a pan European panel, cultural,
social and language barriers will be taken into consideration
in the early phase of the guideline development.
At King’s, Higginson, with Professor Hotopf (Institute of
Psychiatry) are leading the strand on the development of
clinical guidelines for the management of depression,
and providing input into the work on improving the
assessment of depression. A first step is a Cochrane
review into the effectiveness of antidepressants.
Breathlessness Collaborations
As part of the project supported by Cicely Saunders
International we are establishing a Breathlessness
Collaboration. We are developing a database of relevant
work and extend collaborations with others working in
this field. The breathlessness programme is working
together productively with several other projects on
breathlessness: (1) a study on palliative care needs of
patients with COPD, led by Dr. White, and supported by
the Charitable Foundation of King’s College London, to
which Dr Gysels is a co-applicant and participant on the
Advisory Committee of the project; (2) contact and
support is provided to a project undertaken at Imperial
College London on the development of a multidimensional
measurement tool for dyspnoea.
As part of this we organised a joint meeting with the
Medical Research Council in 2005 213 , an international
conference on Breathlessness in November 2006, and a
think-tank/workshop in 2006 with additional support
from the Novartis Foundation.
Partnerships, Research and Capacity
Building in Africa
We have forged productive relationships with partner
agencies across Africa, and international funders, to
generate research activity and enhance research
capacity in Africa.
In recent years the palliative care movement has made
enormous strides in teaching, providing and advocating
for palliative care in Africa. The HIV epidemic has greatly
increased the requirement for palliative care and is the
leading diagnosis for most services. However, cancer
and other non-malignant diseases also contribute
greatly to the required public health response to
palliative care in Sub-Saharan Africa.
Our close partnership with two key organisations in
Africa, the African Palliative Care Association (APCA)
and the Hospice Palliative Care Association of South
Africa, have been very rewarding and a great source of
learning, for both sides.
We were very pleased to attend Archbishop Desmond
Tutu’s birthday party at the British High Commission,
hosted by KCL, to celebrate the life and work of our
alumni member and to look forward to KCL’s support in
digitising his archive.
We believe strongly that while our priority is to develop
evidence and evaluation methods that are relevant and
appropriate to Africa, this is best achieved through
partnerships to enhance the capacity for the African
palliative care community to conduct and report its own
research activity.
We have had a number of successes in capacity
building. Firstly, a Union Internationale Contre Cancer
33

award enabled Richard Harding to attend Hospice Africa
Uganda to teach nurses on the Distance Learning
Diploma. The week-long module on research methods
was very successful and attended by nurses from
across East Africa.
This year we have the first students from Africa
attending our postgraduate education and we hope that
this will continue to be a route to enhance research
methods and other specialist knowledge that can be
shared by attendees in their home countries.
A particularly important development has been the
appointments of the first palliative care research nurses
in Africa, under a grant from the Big Lottery to Cicely
Saunders International and King’s College London. We
have been able to offer these specialist staff protected
contracts to focus on research and quality improvement,
and they have produced high quality research data in a
number of areas. This very enjoyable and successful
partnership is an innovative model we hope to expand,
and the opportunity to attend locally-delivered research
training from KCL staff has been particularly appreciated
by the nurses.
King’s Centre for Palliative Neurology
The King’s Centre for Palliative Care in Neurology
(KCPN) is an exciting development that builds on
internationally recognised clinical and academic
expertise in neurology and palliative care at King’s
College London. Nowhere have these two activities
been thoroughly integrated, despite evidence that many
patients with long term and progressive conditions
benefit from integrated approaches to care. The KCPN
and the component departments have wide-ranging
collaborations, with many hospitals, hospices,
community services – too numerous to list. In addition
there are collaborative projects with researchers and
educators in many academic institutions and national
and international organisations. The Centre is led by
Professor Irene Higginson and Professor Nigel Leigh as
Co-Directors, assisted by an executive team comprising
key partners from the departments of Neurology,
Palliative Care, Policy and Rehabilitation, and from
King’s College Hospital NHS trust. The Management
Advisory Group comprises representatives of relevant
user groups and of the wider academic, clinical,
community and national partnership. In addition the
Directors and Management group are advised by a
Scientific Board to foster collaboration between
research programmes and organisations. Current
members on the Scientific Board include representation
from the Motor Neurone Disease Association,
Parkinson’s Disease Society, Multiple Sclerosis Society,
Royal Hospital of Neurodisability and clinicians and
academics from a variety of settings.
A Consortium for Neuro-palliative
Rehabilitation (NPR)
People often think of rehabilitation as a short-term
intervention to restore someone to independence after
an accident or injury. However, in the context of neurodegenerative
diseases, many people have profound and
complex neurological disability (P&CND) and rehabilitation
in this setting is focused on improving quality of life
for patients and their carers, often against a backdrop of
deteriorating physical, cognitive, communication and
psychosocial function. It is a life-long process, which we
have termed ‘neuropalliative rehabilitation’.
A UK Consortium for Neuropalliative Rehabilitation has
recently been established which has its principal
academic base within the Centre for Palliative Neurology
within King’s College London. The consortium brings
together the three leading UK clinical centres for
P&CND, covering a large catchment population in the
south east quarter of England, and is led by:
• Professor Lynne Turner-Stokes (NW London Regional
Rehabilitation network),
• Professor Keith Andrews (RHN Putney),
• Professor Derick Wade (Oxford Centre for
Enablement).
The consortium already co-ordinates a London and SE
England research group for collaborative and multicentre
research into complex neurological disorders,
and in collaboration with the British Society of Rehabilitation
Medicine (BSRM), setting up a national network of
rehabilitation units involved in research in this area. In
addition to its UK membership, the consortium has
collaborative links internationally with key researchers in
the USA, Australia, New Zealand and the Netherlands.
The purpose of the consortium is to undertake a coordinated
health services research programme in
Neuro-palliative Rehabilitation to address innovation and
interventions to empower and support people with
complex neurological disabilities following brain injury
and other related long term neurological conditions.
The programme supports evidence-based services
which improve the quality of long-term care offered to
patients and their families, in line with user demand and
with Government policy which emphasises patient
choice, user-centred interventions and outcomes,
integrated multi-agency care, and long-term evaluation.
7.2 Involvement in External Committees
2004/5 – 2006/7
Professor Irene Higginson
Chair
• MS Society Applied Research Panel
Membership
• Canadian Institutes for Health Research
• Multiple Sclerosis Society Grant Review Panel
• Dunhill Medical Trust Grants and Research
Committee
• National Cancer Research Institute Palliative Care
Study Development Group (and Primary Palliative
Care and Breathlessness subgroups)
• Cancer Research UK Feasibility Committee
• Macmillan Cancer Support Observatory Group
• Motor Neurone Disease Association Clinical
Advisory Group
• Guy’s and St Thomas’ Charitable Foundation Service
Innovations and Development Group
• Association for Palliative Medicine Science
Committee
• General Medical Council Guidance on Withholding
and Withdrawing Treatment
34

• International Psycho Oncology Society National
Scientific Committee for 2007 World Congress
• European Association for Palliative Care Scientific
Committee for 5th Forum on Research
• HEFCE Research Assessment Exercise Panel – Subpanel
2, Cancer Studies
• COMPASS Collaborative Management Board
Professor Lynne Turner-Stokes
Chair
• Research and Clinical Standards Subcommittee,
British Society of Rehabilitation Medicine
• Multi-professional and Health Service Research
Group, NWLHT
• London Neurosciences Modernisation Team: Neuro
Rehab Executive Working Group
• Guideline Development Group for updating
guidelines for use of botulinum toxin in spasticity
management. BSRM / RCP guidelines
• Healthcare Resource Group (HRG) Expert Working
Panel for rehabilitation, implementing Payment
by Results
• Research and Evidence Subgroup for the National
Service Framework in Long-Term Conditions
• London Neuro-rehabilitation Specialised Commissioning
Consortium: Chair of Clinical and Audit
Committee
• External Reference Group for the National Service
Framework in Long-Term Conditions (Deputy Chair)
• Research Evidence Subgroup for the National
Service Framework in Long Term Conditions
Membership
• Royal College of Physicians (RCP) Rehabilitation
Medicine Committee
• Medical Defence Union Council and Cases
Committee
• RCP Joint Specialist Society Clinical Effectiveness
Forum
• Expert Working Group: Payment by Results. Chapter
A (Nervous System)
• Northwick Park Institute of Medical Research
Academic Board
• NWLHT Clinical Governance Committee
• NWLHT R&D Executive Committee
• NWLHT R&D Peer Review Committee
• NW London Sector Specialist Commissioning Group
for Neurosciences
• Pan London Neuro-rehabilitation Specialist Commissioning
Group
• Trust Board for the Institute of Complex Disability,
Royal Hospital for Neuro-disability, Putney
• BSRM working party for report on Musculo-skeletal
Rehabilitation
• RCP working party: Chronic Disease Management
in the NHS
• Working party: Guidelines for referral for spasticity
management
• Access to rehabilitation: a group convened by the
Civil Justice Council
• National Institute for Palliative Care: Long Term
Neurological Conditions Committee
Dr Polly Edmonds
Membership
• London/Kent Surrey Sussex Speciality Training
Committee for Palliative Medicine (Director)
• Southeast London Cancer Research Network
• NCRI Breathlessness Subgroup
• King’s College Hospital Cancer Services Committee
and Cancer Management Team
• Specialist Medicine Care Group
• King’s College Hospital Clinical Effectiveness and
Audit Committee
• Southeast London Cancer Network Palliative Care
Coordinating Group
• Southeast London Cancer Network Upper GI Cancer
Subgroup
• Lambeth and Southwark Cancer Forum
• London Regional Group of the National Council for
Hospice and Palliative Care Services
Dr Rachel Burman
Membership
• London/Kent Surry Sussex Speciality Training
Committee for Palliative Medicine (Director)
• King’s College Hospital Resuscitation Committee
• St Christopher’s Hospice Ethics Committee
• University of London Senate Subject Panel
in Medical Ethics
Dr Richard Harding
Membership
• International AIDS Society
• African Palliative Care Association
• International Association of Hospice Palliative Care
• Worldwide Forum for Hospice and Palliative Care
Jonathan Koffman
Membership
• Palliative Care Section, Royal Society of Medicine
• Research Ethics Committee, King’s College London/
St Christopher’s Hospice
Dr Sue Hall
Membership
• NCRI Brain Tumour Studies Group Palliative Care
Sub-group
Dr Fliss Murtagh
Membership
• Working Party on use of the Liverpool Care Pathway
for Renal Patients
Dr Morag Farquhar
Membership
• NCRI Palliative Care Breathlessness Sub-Group
Dr Claudia Bausewein
Membership
• Advisory Board for Palliative Medicine in Bavaria for
the Bavarian Ministry for Work, Social Services,
Family and Women (Board Member)
• German Association for Palliative Medicine (Vicepresident)
35

7.3 International and Keynote Lectures
2004
Professor Irene Higginson
Supportive and palliative care: the state of the evidence
base. British Psychosocial Oncology Society. Helping
people live with cancer. UK plans for action.
Goodenough College, Mecklenburgh Square, London.
December 2004.
Lessons from other nations. National Institutes of Health
State of the Science Conference on Improving Care at
the End of Life, Bethesda, USA. December 2004.
Latest progress with the Palliative Care Outcome Scale
(POS).12th Palliative Care Study Day, Norfolk and
Norwich University Hospital, Norwich. Park Farm Hotel,
Norwich. November 2004.
Complex Interventions in Palliative Care Study Day.
Hulme Hall, University of Manchester. November 2004.
The MRC Framework in palliative care: lessons from the
development of group support for carers and a new
service for patients with multiple sclerosis.
Palliative care in Sub-Saharan Africa: An appraisal.
Presentation of the main findings and recommendations.
Palliative Care in Sub-Saharan Africa: An
Appraisal. The County Hall, London. May 2004. Joint
with Dr Richard Harding.
Advancing palliative care for the world’s aging
population. Harold Hatch International Lectureship in
Geriatrics and Oncology, International Longevity Center,
Mount Sinai, New York, USA. April 2004.
NICE work: reviewing the effectiveness of palliative
cancer care for the UK government National Institute of
Clinical Excellence (NICE).Medicine Grand Rounds,
Mount Sinai Hospital, New York, USA. April 2004.
Effectiveness of palliative care: scientific evidence and
unanswered questions. Regional Conference of the Italian
Society of Palliative Care. Biella, Italy. February 2004.
Professor Lynne Turner-Stokes
How to be an effective expert witness. Workshop:
Doctors Update, Belle Plagne, France. Feb 2004.
Demonstrating functional benefits from Botulinum Toxin
injection. Symposium: Botulinum toxin - current practice
in spasticity management. 14th European Congress in
Physical and Rehabilitation Medicine, Vienna, Austria.
May 2004.
The challenges of spasticity management following
acquired brain injury – a European perspective.
Extended lecture tour of Australia to give a series of
lectures on this topic area: Symposia in Perth, Sydney,
Melbourne and Brisbane, Australia. September 2004.
Jonathan Koffman
Multi-professional palliative care education: does it
make a difference? 3rd Research Forum of the European
Association of Palliative Care, Stressa, Italy. June 2004.
2005
Professor Irene Higginson
Latest developments with the Palliative Outcome Scale
and the Support Team Assessment Schedule.
Measuring Palliative Care. Our Lady’s Hospice, Dublin.
October 2005.
The future of palliative medicine. World Day on Hospice
and Palliative Care. Klinik und Poliklinik für Palliativmedizin,
Cologne. October 2005.
Palliative Care. Ageing and Research at King’s: ARK.
Wolfson Centre for Age-Related Disease, King’s College
London. October 2005.
Is there evidence of effectiveness for palliative care:
what, for whom and when? NCRI Cancer Conference.
ICC, Birmingham. October 2005.
From clinical experience to testable hypothesis. Swiss
National Research Day. Kantonsspital, St Gallen
Switzerland. September 2005.
Migliore cure palliative per le personne anziane [Better
palliative care for older people]. Conference on Palliative
Care in the Elderly. National Cancer Institute, Italy.
September 2005.
Hospice Education Institute Hospice and Palliative Care
Study Seminar. King’s Fund, London. March 2005
Ethical issues of evaluating a new palliative care service
for patients with Multiple Sclerosis. Dimensions in
palliative care. Earl Mountbatten Hospice. New
Holmwood Hotel, Isle of Wight. March 2005.
Professor Lynne Turner-Stokes
Evaluation of the evidence for rehabilitation following
acquired brain injury.
George Burniston Oration: Australian Faculty of Rehabilitation
Medicine and International Brain Injury
Association, Melbourne, Australia. May 2005.
Strategies for spasticity management – an individualised
approach. Extended lecture tour: Symposia in
Melbourne, Sydney and Auckland, Australia. May 2005.
Management of depression in acquired brain injury.
Australian Faculty of Rehabilitation Medicine and
International Brain Injury Association, Melbourne,
Australia. May 2005.
UK National Service Frameworks and evidence for
effectiveness in Rehabilitation.
Auckland University of Technology. New Zealand.
May 2005.
36

Assessment and Treatment of Depression in Acquired
Brain Injury. Moss Rehabilitation. Philadelphia, USA.
October 2005.
Evaluation of the evidence for rehabilitation following
acquired brain injury. Moss Rehabilitation. Philadelphia,
USA. October 2005.
Dr Richard Harding
Research in palliative care: an agenda for Africa. Mind,
Body, Spirit Conference of the Hospice Palliative Care
Association of South Africa, Cape Town, South Africa.
December 2005.
We were delighted that the International AIDS Society
held a special session on palliative care at its conference
in Toronto in August 2006, where Dr Richard Harding
was an invited panel speaker.
Dr Fliss Murtagh
Symptom management in patients with end-stage renal
disease managed without dialysis. European Dialysis
and Transplant Nurses Association/European Renal
Care Association 34th International Conference, Vienna,
Austria. September 2005.
Jonathan Koffman
A systematic review of race, ethnicity and culture
as variables in palliative care research. European
Association of Palliative Care. Aachen, Germany.
April 2005.
2006
Professor Irene Higginson
Being at home at the end of life: is it better? Lecture for
receiving the Mendelssohn Award for outstanding
contribution to palliative care. 10th Annual Interdisciplinary
Approach to Symptom Control, Palliative and
Hospice Care Conference. MD Anderson Cancer
Centre, Texas, USA. October 2006.
Extending palliative care beyond cancer: past, present
and future (Plenary lecture) plus 3 workshop sessions
- Non-Cancer end of life care – Discussion; Overview of
measurement tools for quality improvement and care in
palliative care; Dying at home – making it an achievable
goal; Cicely Saunders International – Future Plans. 16th
International Congress on Care of the Terminally Ill.
Palais des Congress, Montreal, Quebec, Canada.
September 2006.
Evaluating effectiveness of intervention in progressive
conditions. Measuring effectiveness against a
background of deterioration. Joint Summer Meeting of
the British Society of Rehabilitation Medicine & The
Society for Research in Rehabilitation. University of
Westminster, Marylebone Campus, London. July 2006.
Better palliative care for older people: a global strategy?
World Health Organisation 8th Global Conference on
Ageing. Copenhagen, Denmark. June 2006.
Better palliative care for older people: World Health
Organisation perspective to national issues. Palliative
Care for Older People. European Association of Palliative
Care Conference on Older People, Our Lady’s Hospice,
Dublin. April 2006.
1. What are the new partnerships in palliative care
research? 2. What effect does palliative day care on
patient outcomes: non-randomised comparison? 6th
Palliative Care Congress, University of Sheffield,
Sheffield. April 2006.
Outcome measurement in palliative care. Outcome
measurement in palliative care: Beyond the NICE
guidance. National Council for Palliative Care, London.
March 2006.
Professor Lynne Turner-Stokes
The Mental Capacity Act 2005 – what will it mean for
surgeons? Plenary session: Doctors updates. Belle
Plagne, France. 2006.
Spinal cord injury – management of patient and their
bladder. Doctors updates. Belle Plagne, France. 2006.
Botulinum toxin in neurogenic bladder dysfunction – a
review of the evidence. Doctors updates. Belle Plagne,
France. 2006.
Goal attainment scaling – a realistic alternative to
standardised outcome measurement?
BTX for upper-limb spasticity – individualised treatment
or standard treatment algorithms? Extended lecture
tour: Symposia in Melbourne, Sydney, Australia. 2006.
Dr Richard Harding
Palliative care: research in Sub-Saharan Africa.
European Association of Palliative Care. Venice, Italy.
May 2006.
HIV palliative care in the era of antiretroviral therapy.
International AIDS Society. Toronto, Canada. August
2006.
Jonathan Koffman
Factors associated with understanding palliative care:
results from a survey of oncology out-patients. 4th
Research Forum of the European Association of
Palliative Care. Venice, Italy. May 2006.
37

8
Publication List
PUBLICATIONS - 2004
PAPERS IN SCIENTIFIC JOURNALS
1. BAUSEWEIN C, HIGGINSON IJ. Appropriate
methods to assess the effectiveness and efficacy of treatments
or interventions to control cancer pain. Journal of Palliative
Medicine 2004;7:423-430
2. BURT J, SHIPMAN C, BARCLAY SIG, Marshall N,
Stimson A, Young J. Continuity within primary palliative care:
an audit of general practice out-of-hours co-operatives.
Journal of Public Health 2004;26:275-276
3. Elkington H, White P, ADDINGTON-HALL JM, Higgs
R, Pettinari C. The last year of life of COPD: a qualitative study
of symptoms and services. Respiratory Medicine 2004:98:439-
445
4. Ewing G, Todd C, Rogers M, BARCLAY SIG, McCabe
J, Martin A. Validation of a symptom measure suitable for use
among palliative care patients in the community: CAMPAS-R.
Journal of Pain and Symptom Management 2004;27:287-299
5. Francis HP, WADE DT, TURNER-STOKES L,
Kingswell RS, Dott CS, Coxon EA. Does reducing spasticity
translate into functional benefit? An exploratory meta-analysis.
Journal of Neurology, Neurosurgery and Psychiatry
2004;75:1547-1551
6. GOMES B, HIGGINSON IJ. Home or hospital?
Choices at the end of life. Journal of the Royal Society of
Medicine 2004;97:413-414
7. Grande GE, FARQUHAR MC, BARCLAY SIG, Todd CJ.
Caregiver bereavement outcome: relationship with Hospice at
Home, satisfaction with care, and home death. Journal of
Palliative Care 2004;20:69-77
8. Gruenewald DA, HIGGINSON IJ, VIVAT B,
EDMONDS PM, BURMAN RE. Quality of life measures for the
palliative care of people severely affected by multiple sclerosis:
a systematic review. Multiple Sclerosis 2004;10: 690-725
9. GYSELS M, Richardson A, HIGGINSON IJ.
Communication training for health professionals who care for
patients with cancer: a systematic review of effectiveness.
Supportive Care in Cancer 2004;12:692-700
10. GYSELS M, HUGHES R, ASPINAL F, ADDINGTON-
HALL JM, HIGGINSON IJ. What methods do stakeholders
prefer for feeding back performance data: a qualitative study in
palliative care. International Journal for Quality in Health Care
2004;16:375-381
11. HALL S, Weinman J, Marteau TM. The
motivating impact of information informing women of a link
between smoking and cervical cancer: the role of coherence.
Health Psychology 2004;23:419-424
carers of patients attending a home palliative care service.
Journal of Pain and Symptom Management 2004;27:396-408
13. HARDING R, Bensley J, Corrigan N, Franks L,
Stratman J, Waller Z, Warner J. Outcomes and lessons from a
pilot RCT of a community-based HIV prevention multi-session
group intervention for gay men. AIDS Care 2004;16:581-585
14. HARDING R, Bensley J, Corrigan N. Targeting
smoking cessation to high prevalence communities: outcomes
from a pilot intervention for gay men. BMC Public Health
2004;4:43
15. HIGGINSON IJ. It would be NICE to have more
evidence? Palliative Medicine 2004;18:85-86 Editorial
16. HIGGINSON IJ, DONALDSON N. Relationship
between three palliative care outcome scales. Health and
Quality of Life Outcomes 2004;2:68-75
17. HUGHES RA, Down K, Sinha A, HIGGINSON IJ,
Leigh PN. Building user involvement in motor neurone disease:
key lessons. Journal of Interprofessional Care 2004;18:80-81
18. HUGHES RA, Sinha A, Aspinal F, Dunckley M,
ADDINGTON-HALL JM, HIGGINSON IJ. What is the potential
for the use of clinical outcome measures to be computerised?
Findings from a qualitative study. International Journal of
Health Care Quality Assurance 2004;17:47-52
19. HUGHES RA, ADDINGTON-HALL JM, Aspinal F,
Dunckley M, HIGGINSON IJ. Developing methods to improve
the quality of end-of-life care. Journal of Interprofessional Care
2004;18:200-201
20. HUGHES RA, Aspinal F, ADDINGTON-HALL JM,
Dunckley M, Faull C, HIGGINSON IJ. It just didn’t work: the
realities of quality assessment in the English health care context.
International Journal of Nursing Studies 2004;41:705-712
21. HUGHES RA, Aspinal F, HIGGINSON IJ, ADDINGTON-
HALL JM, Dunckley M, Faull C, Sinha A. Assessing palliative care
outcomes for people with motor neurone disease living at home.
International Journal of Palliative Nursing 2004;10:449-453
22. Kalra L, Evans A, Perez I, Melbourn A, Patel A, Knapp M,
DONALDSON N. Training carers of stroke patients:
randomised controlled trial. British Medical Journal
2004;328:1099-1101
23. Karus D, Raveis VH, Marconi K, Hanna B, Selwyn P,
Alexander C, Perrone M, HIGGINSON IJ. Service needs of
patients with advanced HIV disease: a comparison of client and
staff reports at three palliative care projects. AIDS Patient Care
and STDs. 2004;18:145-158
12. HARDING R, HIGGINSON IJ, Leam C,
DONALDSON N, Pearce A, George R, Robinson V, Taylor L.
Evaluation of a short-term group intervention for informal
38

24. Karus D, Raveis VH, Marconi K, Selwyn P, Alexander C,
Hanna B, HIGGINSON IJ. Mental health status of clients from
three HIV/AIDS palliative care projects. Palliative and
Supportive Care 2004;2:125-138
25. KOFFMAN J, HIGGINSON IJ. Dying to be home? Preferred
location of death of first-generation black Caribbean and
native-born white patients in the United Kingdom. Journal of
Palliative Medicine 2004;7:628-636
26. Lowton K. Only when I cough? Adults’ disclosure of cystic
fibrosis. Qualitative Health Research 2004;14:167-186
27. McPherson CJ, ADDINGTON-HALL JM. How do proxies’
perceptions of patients’ pain, anxiety, and depression change
during the bereavement period? Journal of Palliative Care
2004;20:12-19
28. MAGEE WL, Davidson JW. Singing In Therapy: Monitoring
disease process in chronic degenerative illness. British Journal
of Music Therapy 2004;18:65-77.
29. MAGEE WL and Davidson, JW. Music therapy in Multiple
Sclerosis: results of a systematic qualitative analysis.
Music Therapy Perspectives 2004;22:39-51.
30. Murray SA, Boyd K, Sheikh A, Thomas K, HIGGINSON IJ.
Developing primary palliative care. British Medical Journal
2004;329:1056-1057. Editorial
31. POTTER J, HIGGINSON IJ. Pain experienced by lung
cancer patients: a review of prevalence, causes and pathophysiology.
Lung Cancer 2004;43:247-257
32. Saunders Y, Ross JR, Broadley KE, EDMONDS PM, Patel
S. Systematic review of bisphosphonates for hypercalcaemia
of malignancy. Palliative Medicine 2004;18:418-431
33. SPECK PW, HIGGINSON IJ, ADDINGTON-HALL JM.
Spiritual needs in health care. British Medical Journal
2004;329:123-124
34. Vigano A, DONALDSON N, HIGGINSON IJ, Bruera E,
Mahmud S, Suarez-Almazor M. Quality of life and survival
prediction in terminal cancer patients. Cancer 2004;101:1090-
1098
35. White C, Pritchard J, TURNER-STOKES L. Exercise for
people with peripheral neuropathy. The Cochrane Database of
Systematic Reviews 2004;Oct 18, Issue 4:CD003904
BOOKS
36. ARMES J, Krishnasamy M, HIGGINSON IJ (Eds). Fatigue
in Cancer. Oxford: Oxford University Press, 2004
37. DAVIES E, HIGGINSON IJ. Palliative Care: The Solid Facts.
World Health Organization. 2004
38. DAVIES E, HIGGINSON IJ. Better palliative care for older
people. World Health Organisation. 2004
39. EDMONDS PM, Sykes N, Wiles J (Eds). Management of
Advanced Disease. London: Arnold Publishers. 4th Edition.
2004
BOOK CHAPTERS
40. ADDINGTON-HALL JM. Referral patterns and access to
specialist palliative care. In: Payne S, Seymour J, Ingleton C
(Eds). Palliative Care Nursing: Principles and Evidence for
Practice London: Open University Press 2004;pp90-107
41. ADDINGTON-HALL JM. Clinical challenges in nonmalignant
disease: overview. In: Sykes N, EDMONDS PM,
Wiles J. Management of Advanced Disease London: Arnold
Publishers. 4th Edition. 2004;pp319-326
42. ARMES J. The experience of cancer-related fatigue. In:
ARMES J, Krishnasamy M, HIGGINSON IJ (Eds). Fatigue in
Cancer. Oxford: Oxford University Press. 2004;pp137-155
43. Aspinal F, HIGGINSON IJ. Audit, outcomes and quality of
life in palliative care. In: Sykes N, EDMONDS P, Wiles J.
Management of Advanced Disease London: Arnold Publishers.
2004;pp27-47
44. Borasio GD, Rogers A, Voltz R. Palliative medicine in
non-malignant neurological disorders. Doyle D, Hanks G,
Cherny N, Calman K (Eds). In: Oxford Textbook of Palliative
Medicine. Oxford: Oxford University Press. 2004;pp925-934
45. EDMONDS PM, Cox S. Symptoms and Palliation.Jones R,
Britten N, Culpepper L, Gass D, Grol R, Mant D, Silagy C (Eds).
In: Oxford Textbook of Primary Medical Care – Volume 2:
Clinical Management. Oxford: Oxford University Press.
2004;pp1295-1299
46. EDMONDS PM. Symptom Assessment. In: Sykes N,
EDMONDS PM, Wiles J, (Eds.) Management of Advanced
Disease. London: Arnold Publishers. 4th Edition. 2004;pp51-54
47. EDMONDS PM. Breathlessness. In: Sykes N, EDMONDS
PM, Wiles J, (Eds). Management of Advanced Disease.
London: Arnold Publishers . 4th Edition. 2004; pp73-82
48. EDMONDS PM. Cough. In: Sykes N, EDMONDS PM,
Wiles J, (Eds). Management of Advanced Disease. London:
Arnold Publishers 4th Edition. 2004; pp101-105
39

49. EDMONDS PM, Wiles J. Pleural Effusions. In: Sykes N,
EDMONDS PM, Wiles J, (Eds). Management of Advanced
Disease. London: Arnold Publishers. 4th Edition. 2004;
pp289-294
50. EDMONDS PM, Wiles J. Travel Abroad. In: Sykes N,
EDMONDS PM, Wiles J, (Eds). Management of Advanced
Disease. London: Arnold Publishers. 4th Edition. 2004; pp545-
548
51. HIGGINSON IJ, Hearn J, ADDINGTON-HALL JM.
Epidemiology of cancer pain. Series Eds: Warfield C, Rice A,
McGrath P and Justins D. Volume (Eds): Sykes N, Fallon MT,
Patt RB. In: Clinical Pain Management – Cancer Pain. London:
Arnold Publishers. 2004; pp21-32
52. HIGGINSON IJ, COSTANTINI M, EDMONDS PM,
Viterbori P. The dying patient and their family. Jones R, Britten
N, Culpepper L, Gass D, Grol R, Mant D, Silagy C (Eds).
In: Oxford Textbook of Primary Medical Care – Volume 2:
Clinical Management. Oxford: Oxford University Press.
2004;pp1271-1277
53. HIGGINSON IJ, EDMONDS PM, Viterbori P,
COSTANTINI M, Cox S. Terminal and palliative care. Jones
R, Britten N, Culpepper L, Gass D, Grol R, Mant D, Silagy C
(Eds). In: Oxford Textbook of Primary Medical Care – Volume
1: Principles and Concepts. Oxford: Oxford University Press.
2004;pp259-264
54. HIGGINSON IJ, ADDINGTON-HALL JM. The epidemiology
of death and symptoms. Doyle D, Hanks G, Cherny N,
Calman K (Eds). In: Oxford Textbook of Palliative Medicine.
Oxford: Oxford University Press. 2004;pp14-24
55. HIGGINSON IJ, ARMES J, Krishnasamy M. Introduction.
In: ARMES J, Krishnasamy M, HIGGINSON IJ (Eds). Fatigue in
Cancer. Oxford: Oxford University Press. 2004;pp17-21
56. HIGGINSON IJ. Clinical and organizational audit in
palliative medicine. In: Oxford Textbook of Palliative Medicine.
Doyle D, Hanks G, Cherny N, Calman K. Oxford (Eds): Oxford
University Press. 2004;pp184-196
57. KOFFMAN J, Camps M. No way in: including the excluded
at the end of life. In: Payne S, Seymour J, Ingleton C (Eds).
Palliative Care Nursing: Principles and Evidence for Practice
London: Open University Press 2004;pp364-384
58.KOFFMAN J, HIGGINSON IJ. Equal access in palliative
care. In: Sykes N, EDMONDS PM, Wiles J (Eds). Management
of Advanced Disease 4th Edition. London: Arnold Publishers
2004; pp461-470
59. MALIK FA, Hall EJ, EDMONDS P. The palliative
management of raised intra-cranial pressure. In: BOOTH S,
Bruera E (Eds). Palliative Care Consultations in Primary and
Metastatic Brain Tumours Oxford: Oxford University Press
2004;pp61-81
60. SPECK PW. Spiritual Concerns. In: Sykes N, EDMONDS
PM, Wiles J, (Eds). Management of Advanced Disease.
London: Arnold Publishers. 4th Edition. 2004; pp471-481
61. Swann D, EDMONDS PM. Dysphagia. In: Sykes N,
EDMONDS PM, Wiles J, (Eds). Management of Advanced
Disease. London: Arnold Publishers. 4th Edition. 2004; pp136-145
62. Swann D, EDMONDS PM. Sweating. In: EDMONDS PM,
Sykes N, Wiles J, (Eds). Management of Advanced Disease.
London: Arnold Publishers. 4th Edition. 2004; pp213-218
63. Swann D, EDMONDS PM. The Management of Urinary
Symptoms. In: Sykes N, EDMONDS PM, Wiles J, (Eds).
Management of Advanced Disease. London: Arnold Publishers.
4th Edition. 2004; pp219-224
64. Thorns A, EDMONDS PM. Pruritis. In: Sykes N,
EDMONDS PM, Wiles J, (Eds). Management of Advanced
Disease. London: Arnold Publishers. 4th Edition. 2004; pp206-
213
65. Wiles J, Rutter D, Exton L, Carey I, EDMONDS PM, Sykes
N. Management of Pain. In: Sykes N, EDMONDS PM, Wiles J,
(Eds). Management of Advanced Disease. London: Arnold
Publishers. 4th Edition. 2004; pp176-205
REPORTS
66. Burt J, SHIPMAN C, ADDINGTON-HALL JM. Cancer and
palliative care within primary care: a review of the recent
literature. Report for Macmillan Cancer Relief. February 2004.
Department of Palliative Care and Policy, King’s College
London
67. DAVIES E. What are the palliative care needs of older
people and how might they be met? WHO Regional Office for
Europe’s Health Evidence Network. August 2004. http://www.
euro.who.int/document/E83747.pdf
68. GYSELS M, HIGGINSON IJ. Improving supportive and
palliative care for adults with cancer: Research Evidence.
National Institute for Clinical Excellence. 2004 http://www.nice.
org.uk/pdf/csgspresearchevidence.pdf
69. HARDING R, HIGGINSON IJ. Palliative care in Sub-
Saharan Africa. An appraisal. The Diana, Princess of Wales
Memorial Fund. 2004. http://www.theworkcontinues.org/
causes/pall_library.asp
70. HARDING R. Palliative care in Sub-Saharan Africa. AIDS
Treatment Update. 2004 http://www.nam.org.uk/en/docs/
9FBC7A1D-5D5E-4655-AC9B-1A6E2DE8E2DE.asp
71. LOWTON K, HIGGINSON IJ, Thomas J, Jones C, Kraus F,
Monroe B. Supporting bereaved students in primary and
secondary schools. King’s College London and National
Council for Hospice and Specialist Palliative Care Services.
2004
72. Ross JR, Saunders Y, EDMONDS PM, Patel S, Wonderling D,
Normand C, Broadley K. A Systematic review of the role of
bisphosphonates in metastatic disease. Health Technology
Assessment. NHS R&D HTA Programme. Health Technology
Assessment 2004;8 http://www.ncchta.org/fullmono/mon804.pdf
73. Tyerman A, Meehan M (TURNER-STOKES L Ed)
Vocational assessment and rehabilitation after acquired brain
injury: Inter-agency Guidelines. Prepared in collaboration with
Jobcentre Plus, British Society of Rehabilitation Medicine.
Royal College of Physicians, 2004
40

RESEARCH LETTERS
74. ALLOWAY L, BURT J, HARDING R, HIGGINSON IJ.
Study of white coat effect on the prognosis of women with
breast cancer. European Journal of Cancer Care 2004;13:193
75. Cartledge P, HARDING R, Mpanga Sebuyira L,
HIGGINSON IJ. Prevalence, severity, duration and
measurement of pain in Sub-Saharan Africa. Palliative
Medicine 2004;18:737-738
PUBLICATIONS IN OTHER JOURNALS
76. EDMONDS PM. Organization of palliative care services.
Medicine 2004;32:2-3
77. EDMONDS PM, BURMAN R, Sinnott C. The goldfish bowl.
European Journal of Palliative Care 2004;11;69-71
78. HARDING R, Mwangi-Powell F. The role of advocacy in
expanding palliative care. African Palliative Care Association
Journal of Palliative Care 2004;1:24-25
79. HARDING R. AIDS in Africa (2nd Edition) by Essex M,
Mboup S, Kanki PH, Marlink RG (Eds). AIDS Care 2004:16:132-
133. Book Review
80. HIGGINSON IJ. Effectiveness in palliative care: gathering the
evidence. Beyond the randomised trial: evidence and effectiveness
in palliative care. Report of a conference of the Scottish
Partnership for Palliative Care 10 September 2003 2004;7-9
81. Lowton K, HIGGINSON IJ. Bereavement in the classroom.
European Journal of Palliative Care 2004;11:28-31
82. MURTAGH FEM, Preston M, HIGGINSON IJ. Patterns of
dying: palliative care for non-malignant disease. Clinical
Medicine 2004;4:39-44
83. Ramsdale DR, TURNER-STOKES L. Prophylaxis and
treatment of infective endocarditis in adults: a concise guide.
Clinical Medicine 2004;4:545-550
84. TURNER-STOKES L. The evidence for the cost-effectiveness
of rehabilitation following acquired brain injury. Clinical
Medicine 2004;4:10-12
85. TURNER-STOKES L, WADE D. Rehabilitation following
acquired brain injury: concise guidance. Clinical Medicine
2004;4:61-65
PUBLISHED ABSTRACTS
86. Ali S, Sykes N, Hall E, Buchan J, Lowton K, Emmitt K.
The prevalence of MRSA in a hospice. Palliative Medicine
2004;18:160
87. ALLOWAY L, Brayden P, Gleeson C. Out-of-hours
specialist palliative care: a prospective study of calls
concerning patient care. Palliative Medicine 2004;18:154
88. ALLOWAY L, Minton O. The accuracy of the clinical
prediction of survival: a comparison of doctors and nurses
estimations and the failure to validate the palliative prognostic
(PAP) score in a hospice. Palliative Medicine 2004;18:155
89. ARMES J, ADDINGTON-HALL JM, Hotopf M. A
systematic review of nonpharmacological interventions for
cancer-related fatigue. Palliative Medicine 2004;18:150
90. BARCLAY SIG, Todd C, McCabe J, Ewing G, Rogers M,
ADDINGTON-HALL JM. How accurate are GP’s prognostic
estimates? Palliative Medicine 2004;18:155-156
91. BURMAN R, VIVAT B, EDMONDS PM, Silber E,
HIGGINSON IJ. Palliative care needs of people severely
affected by multiple sclerosis (MS): views of healthcare
professionals. Palliative Medicine 2004;18:163
92. BURT J, ADDINGTON-HALL JM, SHIPMAN C,
Richardson A, Ream E, Beynon T. Out-of-hours care in the last
months of life: the needs of cancer and noncancer patients.
Palliative Medicine 2004;18:157-158
93. BURT J, ADDINGTON-HALL JM, SHIPMAN C,
Richardson A, Ream E. Is access to community nursing for
palliative care patients equitable? Palliative Medicine
2004;18:368
94. BURT J, ADDINGTON-HALL JM, SHIPMAN C,
Richardson A, Beynon T. Postal questionnaires to bereaved
carers – are they still feasible and ethical in England? Palliative
Medicine 2004;18:387-388
95. Grande G, FARQUHAR MC, BARCLAY SIG, Todd CJ.
Changes in informal carers’ retrospective evaluations of
palliative care. Palliative Medicine 2004;18:388
96. GYSELS M, HIGGINSON IJ. Gaps and pitfalls in collating
the evidence for policy on service delivery in supportive and
palliative care. Palliative Medicine 2004;18:352
97. GYSELS M, HIGGINSON IJ, Richardson A. Communicatietraining
voor gezondheidswerkers die zorgen voor patienten
met gevorderde kanker: een systematische review. Nederlands
Tijdschrift voor Palliative Zorg 2004;4:91
98. JACKSON D, Horn S, Kersten P, WILLIAMS H, TURNER-
STOKES L. Stroke patients’ experiences of shoulder pain.
Clinical Rehabilitation 2004;18:931
99. KOFFMAN J, HIGGINSON IJ, DONALDSON N. Outcomes
of bereavement among relatives or close friends of deceased
first generation Caribbean and native-born white patients with
advanced disease: does ethnicity matter? Palliative Medicine
2004;18:152-153
100. KOFFMAN J, HIGGINSON IJ. Multi-professional palliative
care education: does it make a difference? Palliative Medicine
2004;18:351-352
101. PAYNE JA, HIGGINSON IJ. Resuscitation preferences of
terminally ill patients: influencing factors and stability over time:
a systematic review. Palliative Medicine 2004;18:166
102. POTTER J, HIGGINSON IJ, Quigley C, Scadding J. Pain
experienced by patients attending a diabetes outpatient clinic:
prevalence, severity and impact on psychosocial function.
Palliative Medicine 2004;18:163
103. Robinson V, George R, SPECK PW. Examining qualitative
research systematically: a way of evaluating the rigour and
quality of papers on spiritual care. Palliative Medicine
2004;18:355
41

104. SALEEM T, HUGHES RA, ADDINGTON-HALL JM.
Assessing cultural acceptability, sensitivity and appropriateness
of translated versions of palliative care evaluations in
south Asian communities. Palliative Medicine 2004;18:152
105. SHIPMAN C, ADDINGTON-HALL J, Richardson A,
BURT J, Ream E, Beynon T. 24-hour district nursing services
for palliative care patients: the challenge for cancer networks.
Palliative Medicine 2004;18:153-154
106. SHIPMAN C, DONALDSON N, Richardson A, ADDING-
TON-HALL JM, BURT J, Beynon T. Does palliative care
education impact on district nursing confidence? Palliative
Medicine 2004;18:162
107. SHIPMAN C, Richardson A, BURT J, Ream E. When
randomised controlled trials are not possible – design issues
from a national evaluation. Palliative Medicine 2004;18:312
108. SHIPMAN C, Richardson A, ADDINGTON-HALL JM,
BURT J, Beynon T. Evaluating a community nurse palliative
care educational programme: the views of family doctors.
Palliative Medicine 2004;18:361
109. Todd C, Ewing G, Rogers M, BARCLAY SIG, McCabe A,
Martin J. A symptom measure for palliative care in the
community: CAMPAS-R. Palliative Medicine 2004;18:309
110. TURNER-STOKES L, Kalmus M, Clegg F. Validity of the
DISCs - a simple screening tool for depression in patients
following acquired brain injury. Archives of Physical Medicine
and Rehabilitation 2004;85:6
111. TURNER-STOKES L, Kalmus M, Clegg F. Sensitivity to
change of the depression intensity scale circles: A simple rating
scale for depression in patients after brain injury. Archives of
Physical Medicine and Rehabilitation 2004; 85:14-15
112. VIVAT B, EDMONDS PM, BURMAN R, Silber E,
HIGGINSON IJ. Developing a palliative care and neurological
service for people severely affected by multiple sclerosis (MS)
in southeast London. Palliative Medicine 2004;18:337
113. VIVAT B, BURMAN R, EDMONDS PM, Silber E,
HIGGINSON IJ. Palliative care needs of people severely
affected by multiple sclerosis (MS): views of people with MS
and their informal carers. Palliative Medicine 2004;18:158
OTHER MEETING ABSTRACTS
114. Bensley J, Corrigan N, HARDING R. The biology of
transmission: outcomes from a national groupwork program.
XV International AIDS Conference. Bangkok, 2004.
115. BURT J, ADDINGTON-HALL JM, SHIPMAN C,
Richardson A, BEYNON T. Postal questionnaires to bereaved
carers – are they still feasible and ethical in England. Oral
Presentation. 3rd Research Forum of the European Association
for Palliative Care Stresa, Italy, June 2004
116. BURT J, ADDINGTON-HALL JM, SHIPMAN C,
Richardson A, Ream E. Is access to community nursing for
palliative care patients equitable? Poster presentation. 3rd
Research Forum of the European Association for Palliative Care
Stresa, Italy, June 2004
117. BURT J, ADDINGTON-HALL JM, SHIPMAN C,
Richardson A, Ream E, Beynon T. Out-of-hours care in the last
months of life: the needs of cancer and non-cancer patients.
Oral Presentation. 5th Palliative Care Congress, University of
Warwick, March 2004
118. Francis HP, WADE DT, TURNER-STOKES L, Kingswell
RS, Dott CS, Coxon EA. Does reducing spasticity translate into
functional benefit? An exploratory meta-analysis. Poster
presentation: 14th European Congress in Physical and
Rehabilitation Medicine, Vienna, May 2004
119. Pahl N, HARDING R, Smith P. Informal carers in palliative
care: underserved and overlooked. 15th International
Conference on Care of the Terminally Ill, Montreal, 2004.
120. SHIPMAN C, ADDINGTON-HALL JM, Richardson A, BURT
J, Ream E. When randomised controlled trials are not possible –
design issues from a national evaluation. Oral presentation. 3rd
Research Forum of the European Association for Palliative Care
Stresa, Italy, June 2004
121. SHIPMAN C, ADDINGTON-HALL JM, Richardson A, BURT
J, Beynon T. Evaluating a community nurse palliative care
educational programme: the views of family doctors. Poster
presentation. 3rd Research Forum of the European Association
for Palliative Care, Stresa, Italy, June 2004
122. SHIPMAN C, ADDINGTON-HALL JM, Richardson A, BURT
J, Ream E, Beynon T. 24 hour district nursing services for
palliative care patients – the challenge for cancer networks.
Oral Presentation. 5th Palliative Care Congress, University of
Warwick, March 2004
123. SHIPMAN C, DONALDSON N, Richardson A,
ADDINGTON-HALL JM, BURT J, Beynon T. Does palliative
care education impact on district nursing confidence? Poster
presentation. 5th Palliative Care Congress, University of
Warwick, March 2004.
124. TURNER-STOKES L, WILLIAMS H, Paul S. The cost
efficiency of rehabilitation in severe complex brain injury.
Poster Presentation. 14th European Congress in Physical and
Rehabilitation Medicine, Vienna, May 2004
125. TURNER-STOKES L. Being an effective expert witness.
Oral Presentation. Royal Society of Medicine Section of
Urology, Winter meeting, Beaver Creek, Colorado, April 2004
126. TURNER-STOKES L. Assessment of shoulder pain
following stroke. sensitivity of the ShoulderQ. Oral Presentation:
14th European Congress in Physical and Rehabilitation
Medicine, Vienna, May 2004
127. TURNER-STOKES L, ASHFORD S, Nyein K. Goal
attainment scaling to detect functional gains from botulinum
toxin injection for management of the spastic upper limb.
Poster Presentation: 14th European Congress in Physical and
Rehabilitation Medicine, Vienna, May 2004
128. Wolf RC, Butler M, de Lister M, Weise G, Placenia F,
Pappas G, HARDING R, van Praag E, Marconi KM. Piloting
palliative care assessment methods in the Dominican Republic.
XV International AIDS Conference, Bangkok, 2004.
42

PUBLICATIONS - 2005
PAPERS IN SCIENTIFIC JOURNALS
129. ADDINGTON-HALL JM, Karlsen S. A national survey of
health professionals and volunteers working in voluntary hospice
services in the UK. I. Attitudes to current issues affecting
hospices and palliative care. Palliative Medicine 2005;19:40-48
130. ADDINGTON-HALL JM, Karlsen S. A national survey of
health professionals and volunteers working in voluntary
hospices in the UK. II. Staff and volunteers’ experiences of
working in hospices. Palliative Medicine 2005;19:49-57
131. ASHFORD S. Why is the functional independence
measure used to identify some rehabilitation needs in stroke
survivors when there are better tools? Physiotherapy Research
International 2005;10:182-184
132. BAUSEWEIN C, Fegg M, Radbruch L, Nauck F, von
Mackensen S, Borasio GD, HIGGINSON IJ. Validation and
clinical application of the German version of the Palliative Care
Outcome Scale (POS). Journal of Pain and Symptom
Management 2005;30:51-62
133. BURT J, SHIPMAN C. Palliative care: challenges in caring
for dying people. British Journal of Nursing 2005;14:306
134. Catt S, Blanchard M, ADDINGTON-HALL JM, J, Zis M,
Blizard R, King M. Older adults’ attitudes to death, palliative
treatment and hospice care. Palliative Medicine 2005;19:402-410
135. Catt S, Blanchard M, ADDINGTON-HALL JM, Zis M,
Blizard B, King M. The development of a questionnaire to
assess the attitudes of older people to end-of-life issues
(AEOLI). Palliative Medicine 2005;19:397-401
136. Disler P, TURNER-STOKES L, WADE DT, Sackley C.
Rehabilitation interventions for footdrop in neuromuscular
disease (Protocol for a Cochrane Review 2002). The Cochrane
Library 2004; Issue 2. Oxford: Update Software
137. DAVIES E, HIGGINSON IJ. Systematic review of specialist
palliative day-care for adults with cancer. Supportive Care in
Cancer 2005;13:607-627
138. Douglas H-R, Normand C, HIGGINSON IJ, Goodwin D. A
new approach to eliciting patients’ preferences for palliative
day care: the choice experiment method. Journal of Pain and
Symptom Management 2005:29:435-445
139. Dunckley M, Aspinal F, ADDINGTON-HALL JM, HUGHES
R, HIGGINSON IJ. A research study to identify facilitators and
barriers to outcome measure implementation. International
Journal of Palliative Nursing 2005:11:218 - 225
140. EDMONDS PM, Rogers A, ADDINGTON-HALL JM,
McCoy A, Coats AJS, Gibbs SR. Patient descriptions of
breathlessness in heart failure. International Journal of
Cardiology 2005;98:61-66
141. Elkington H, White P, ADDINGTON-HALL JM, Higgs R,
EDMONDS PM. The healthcare needs of chronic obstructive
pulmonary disease patients in the last year of life. Palliative
Medicine 2005;19:485-491
142. FARQUHAR MC, BARCLAY SIG, Earl H, Grande GE,
Emery J, Crawford RAF. Barriers to effective communication
across the primary/secondary interface: examples from the
ovarian cancer patient journey (a qualitative study). European
Journal of Cancer 2005;14:359-366
143. GYSELS M, HIGGINSON IJ, Richardson A. Communication
training for health professionals who care for patients with
cancer: a systematic review of training methods. Supportive
Care in Cancer 2005;13:356-366
144. GYSELS M, Pool R, Nyanzi R. The adventures of the randy
professor and Angela the sugar mummy: sex in fictional series
in Ugandan popular magazines. AIDS Care 2005;17:967-977
145. HALL S, Vogt F, Marteau TM. A short report: Survey of
practice nurses’ attitudes towards giving smoking cessation
advice. Family Practice 2005;22:614-616
146. HARDING R, Karus D, Easterbrook P, Raveis VH,
HIGGINSON IJ, Marconi K. Does palliative care improve
outcomes for patients with HIV/AIDS? A systematic review of
the evidence. Sexually Transmitted Infections 2005;81:5-14
147. HARDING R, Easterbrook P, HIGGINSON IJ, Karus D,
Raveis V, Marconi K. Access and equity in HIV/AIDS palliative
care: a review of the evidence and responses. Palliative
Medicine 2005;19:251-258
148. HARDING R, HIGGINSON IJ. Palliative Care in Sub-
Saharan Africa. The Lancet 2005:365:1971-1978
149. HARDING R, Leam C. Clinical notes for informal carers in
palliative care: recommendations from a random patient file
audit. Palliative Medicine 2005;19:639-642
150. HIGGINSON IJ, KOFFMAN J. Public health and palliative
care. Clinics in Geriatric Medicine 2005;21:45-55
151. HIGGINSON IJ. End-of-life care: lessons from other
nations. Journal of Palliative Medicine 2005;8:S161-S173
152. HUGHES RA, Sinha A, HIGGINSON IJ, Down K, Leigh
PN. Living with motor neurone disease: lives, experiences of
services and suggestions for change. Health and Social Care in
the Community 2005;13:64-74
153. HUGHES RA, SALEEM T, ADDINGTON-HALL JM.
Towards a culturally acceptable end-of-life survey questionnaire:
a Bengali translation of VOICES. International Journal of
Palliative Nursing 2005;11:116-123
154. HUGHES RA, Addington-Hall JM. Feeding back survey
research findings within palliative care. Findings from
qualitative research. International Journal of Nursing Studies
2005;42:449-456
155. KOFFMAN J, HIGGINSON IJ. Assessing the effectiveness
and acceptability of interprofessional palliative care
education. Journal of Palliative Care 2005;21:262-269
156. KOFFMAN J, DONALDSON N, Hotopf M, HIGGINSON
IJ. Does ethnicity matter? Bereavement outcomes in two
ethnic groups living in the United Kingdom. Palliative and
Supportive Care 2005;3:183-190
157. Lock A, HIGGINSON IJ. Patterns and predictors of place
of cancer death for the oldest old. BMC Palliative Care 2005;4:6
43

158. Logie DE, HARDING R. An evaluation of a morphine
public health programme for cancer and AIDS pain relief in
sub-Saharan Africa. BMC Public Health 2005;5:82
159. MAGEE WL. Music therapy with patients in low
awareness states: assessment and treatment approaches in
multidisciplinary care. Neuropsychological Rehabilitation
2005;15:522-536.
160. Rajasekaran M, EDMONDS PM, HIGGINSON IJ.
Systematic review of hypnotherapy for treating symptoms in
terminally ill adult cancer patients. Palliative Medicine
2005;19:418-426
161. ROGERS A, ADDINGTON-HALL JM. Care of the dying
stroke patient in the acute setting. Journal of Research in
Nursing 2005;10:153-167
162. SHIPMAN C, ADDINGTON-HALL JM, Richardson A,
BURT J, Ream E, Beynon T. Palliative care services in England:
a survey of district nurses’ views. British Journal of Community
Nursing 2005;10:381-386
163. Thomas VN, SALEEM T, Abraham R. Barriers to effective
uptake of cancer screening among black and minority ethnic
groups. International Journal of Palliative Nursing 2005:11:562-571
164. TURNER-STOKES L, Kalmus M, Hirani D, Clegg F. The
Depression Anxiety Scale Circles (DISCs): a first evaluation of a
simple assessment tool for depression in the context of brain
injury. Journal of Neurology, Neurosurgery and Psychiatry
2005:76:1273-1278
165. TURNER-STOKES L, Disler PB, Nair A, WADE DT. Multidisciplinary
rehabilitation for acquired brain injury in adults of
working age. The Cochrane Database of Systematic Reviews
2005:Issue 3;1-30
166. TURNER-STOKES L. Evaluation of the evidence for
rehabilitation following acquired brain injury. Brain Impairment
2005;6:161-168
167. TURNER-STOKES L. The national service framework for
long term conditions: a novel approach for a “new style” NSF.
Journal of Neurology, Neurosurgery and Psychiatry
2005:76;901-902
168. Vejlgaard T, ADDINGTON-HALL JM. Attitudes of Danish
doctors and nurses to palliative and terminal care. Palliative
Medicine 2005;19:119-127
169. Vogt F, HALL S, Marteau TM. General practitioners’ and
family physicians’ negative beliefs and attitudes towards
discussing smoking cessation with patients: a systematic
review. Addiction 2005;100:1223-1231
BOOK CHAPTERS
170. ASHFORD S, McIntyre A, Minns T. Body structures and
body functions: Part 1. In: McIntyre A, Atwal A (Eds). Occupational
Therapy and Older People. Blackwell Publishing Ltd:
Oxford 2005, pp105-129
171. HARDING R. Carers – current research and developments.
In: Olivier D, Luft G (Eds). Loss Change and
Bereavement in Palliative Care. Open University Press:
Maidenhead. 2005, pp15-166
172. KOFFMAN J, HIGGINSON IJ. Rights, needs and social
exclusion at the end of life. In: Faull C, Carter Y, Daniels L (Eds).
Handbook of Palliative Care 2nd Edition. Blackwell Publishing:
London 2005. pp43-60
173. MAGEE WL. Music therapy with patients in low
awareness states: assessment and treatment approaches in
multidisciplinary care. In: Coleman M (Ed). The Assessment
and Rehabilitation of Vegetative and Minimally Conscious
Patients. Psychology Press: London 2005. pp522-536.
174. MAGEE WL. Vokalimprovisation zur Förderung
nonverbaler Interaktion. In: Jochims S (Ed). Musiktherapie in
der Neurologie / Neurorehabilitation. Erwachsener: Weltweite
Konzepte, Forschung und Praxis. Hippocampus Verlag KG:
Bad Honnef, Germany 2005. pp252-256.
175. MAGEE, WL. Sprachrehabilitation durch Singtechniken.
In: Jochims S (Ed). Musiktherapie in der Neurologie / Neurorehabilitation.
Erwachsener: Weltweite Konzepte, Forschung und
Praxis. Hippocampus Verlag KG: Bad Honnef, Germany 2005.
pp 285-291.
176. MAGEE WL, Davidson JW. Beeinflussung der Stimmung
durch Musictherapie bei neurologishcen Patienten – Eine
Pilotstudie. In: Jochims S (Ed). Musiktherapie in der Neurologie
/ Neurorehabilitation. Erwachsener: Weltweite Konzepte,
Forschung und Praxis. Hippocampus Verlag KG: Bad Honnef,
Germany 2005. pp355-363.
177. MAGEE WL. Angesichts der Progression von Chorea
Huntington. In: Jochims S (Ed). Musiktherapie in der Neurologie
/ Neurorehabilitation. Erwachsener: Weltweite Konzepte,
Forschung und Praxis. Hippocampus Verlag KG: Bad Honnef,
Germany 2005. pp 323-336.
178. MURTAGH FEM, BURMAN R, EDMONDS PM. Breathlessness
in neurological disease. In: BOOTH S, Dudgeon D
(Eds). Dyspnoea in Advanced Disease: A Guide to Clinical
Management Oxford University Press: Oxford 2005. pp 99-112
RESEARCH LETTERS
179. ASHFORD S. Why is the functional independence
measure used to identify some rehabilitation needs in stroke
survivors when there are better tools? Physiotherapy Research
International 2005;10:57-58
180. HARDING R, Easterbrook P, Dinat N, HIGGINSON IJ. Pain
and symptom control in HIV disease: under-researched and
poorly managed. Clinical Infectious Diseases 2005;40:491-492
181. Henderson M, ADDINGTON-HALL JM, Hotopf M. The
willingness of palliative care patients to participate in research.
Journal of Pain and Symptom Management 2005;29:116-118
44

182. MURTAGH FEM, Thorns A. Taking an ‘ethics history’.
Journal of the Royal Society of Medicine 2005;98:442-443
183. Oliver D, MURTAGH FEM, Jusic A. Palliative care in
Croatia: an international collaboration. European Journal of
Palliative Care 2005;12:127-129 Commentary
184. Senyimba C, Mwebesa E, Kennelly S, Frame K, HARDING
R. A theme issue by, for, and about Africa. Palliative care and
antiretroviral treatment can be integrated. British Medical
Journal 2005;331:778-779
REPORTS
185. BURT J, SHIPMAN C, ADDINGTON-HALL JM, White P.
Palliative care. Perspectives on caring for dying people in
London. London, King’s Fund. 2005
186. Down K, HUGHES RA, Sinha A, HIGGINSON IJ Leigh
PN. Involving users in shaping motor neurone disease services.
Joseph Rowntree Foundation. 2005
187. FARQUHAR M, BARCLAY SIG, Corrie P, Wilson C, Emery
J and Sutton S. The transition from hospital to community for
the final stage of the colo-rectal cancer patient journey:
passing on the baton. Report to the Addenbrooke’s Charities.
GPPCRU, University of Cambridge. 2005
188. Lowton K. Relatives’ experiences of care given to young
people who have died from cystic fibrosis. Final report to The
Cicely Saunders Foundation. King’s College London. 2005.
189. TURNER-STOKES L. Concise guidance for the use of antidepressant
medication in adults undergoing recovery or
rehabilitation following acquired brain injury. Prepared in
collaboration the British Society of Rehabilitation Medicine, British
Geriatrics Society. Royal College of Physicians, London. 2005
PUBLICATIONS IN OTHER JOURNALS
190. Cartledge P, Clausen S, HARDING R, Mpanga-Sebuyira
L. A pilot study: the use of paediatric faces pain scales to
assess pain in adults in a Sub-Saharan hospice. Palliative Care
Association of Uganda Journal of Palliative Care 2005;7:14-18
191. HIGGINSON IJ. The state of play. Cancer Nursing Practice
2005;4(Supp):4
192. TURNER-STOKES L, MacWalter R. Use of antidepressant
medication following acquired brain injury: concise
guidance. Clinical Medicine 2005;5:268-274
193. TURNER-STOKES L, Whitworth D. The National Service
Framework for Long Term Conditions: the challenges ahead.
Clinical Medicine 2005:5;203-206
PUBLISHED ABSTRACTS
194. De Lima L, HARDING R, Pereira J, Norval D. Palliative
Care Research and Education in the Developing World: Is It
Possible? European Journal of Palliative Care 2005:EAPC
195. GOMES B, HIGGINSON IJ. Factors affecting the place
where cancer patients die: a systematic review. European
Journal of Palliative Care 2005:EAPC
196. GOMES B, HARDING R, HIGGINSON IJ. Meeting
existential needs at the end of life: a systematic review of
interventions. European Journal of Palliative Care 2005:EAPC
197. Grande G, FARQUHAR MC, BARCLAY SIG, Todd C.
Patient access to palliative home care: the role of caregiver
age. European Journal of Palliative Care 2005:EAPC
198. GYSELS M, HIGGINSON IJ, Richardson A. Do patientheld
records improve continuity in cancer and palliative care: a
systematic review. European Journal of Palliative Care 2005:
EAPC
199. HARDING R, Leam C. The assessment and response to
needs among informal carers: findings from a closed file audit.
European Journal of Palliative Care 2005:EAPC
200. HIGGINSON IJ, EDMONDS PM, VIVAT B, BURMAN R,
Silber E. Do people with MS have palliative care needs?
European Journal of Palliative Care 2005:EAPC
201. HIGGINSON IJ. Audit in Palliative Care – does it work?
European Journal of Palliative Care 2005:EAPC
202. HIGGINSON IJ. Choosing the right research design.
European Journal of Palliative Care 2005:EAPC
203. HIGGINSON IJ. Response shift in studies assessing
quality of life: should we abandon all measurement? European
Journal of Palliative Care 2005:EAPC
204. KOFFMAN J, HIGGINSON IJ. Do words matter? A
systematic review of race, ethnicity and culture as variables in
palliative care research. European Journal of Palliative Care
2005:81 EAPC
205. Lock A, HIGGINSON IJ. Place of death in advanced
cancer among older people: A qualitative systematic literature
review. European Journal of Palliative Care 2005:EAPC
OTHER MEETING ABSTRACTS
206. De Lima L, HARDING R, HIGGINSON IJ. Palliative care
research in the developing world: how can we move forward?
9th Congress of the European Association for Palliative Care.
Aachen, 2005.
207. HARDING R, Cartledge P, Mpanga–Sebuyira L, Clausen
S. Pain and symptom prevalence and measurement: findings
from an audit in a Ugandan Hospice. 7th International AIDS
Impact Conference. Cape Town, 2005.
208. SALEEM T, Hughes R, ADDINGTON-HALL JM (2004).
Assessing the cultural acceptability, sensitivity and appropriateness
of translated versions of palliative care evaluation
surveys in South Asian communities. The 5th Palliative Care
Congress abstracts, Warwick, March 2005.
45

PUBLICATIONS - 2006
PAPERS IN SCIENTIFIC JOURNALS
209. ASHFORD S, TURNER-STOKES L. Goal attainment for
spasticity management using botulinum toxin. Physiotherapy
Research International 2006;11:24-34
210. Aspinal F, HUGHES RA, Dunckley M, ADDINGTON-HALL
JM. What is important to measure in the last months and
weeks of life? A modified nominal group study. International
Journal of Nursing Studies 2006;43:393-403
211. BAUSEWEIN C, Kühnbach R, Haberland B. Adrenal
insufficiency caused by bilateral adrenal metastases – a rare
treatable cause for recurrent nausea and vomiting in metastatic
breast cancer. Onkologie 2006;29:203-205
212. BOOTH S, FARQUHAR MC, GYSELS M, BAUSEWEIN
C, HIGGINSON IJ. The impact of a breathlessness intervention
service (BIS) on the lives of patients with intractable dyspnea: A
qualitative phase I study. Palliative and Supportive Care
2006;4:287-293
213. BOOTH S. Improving research methodology in breathlessness:
a meeting convened by the MRC Clinical Trials Unit
and The Cicely Saunders Foundation. Palliative Medicine
2006;20:219-220
214. Braun SM, Beurskens AJ, Borm PJ, Schack T, WADE DT.
The effects of mental practice in stroke rehabilitation: a
systematic review. Archives of Physical Medicine and Rehabilitation
2006;87:842-852
215. Bugge E, HIGGINSON IJ. Palliative care and the need for
education – do we know what makes a difference? A limited
systematic review. Health Education Journal 2006;65:101-125
216. BURT J, SHIPMAN C, White P, ADDINGTON-HALL JM.
Roles, service knowledge and priorities in the provision of
palliative care: a postal survey of London GPs. Palliative
Medicine 2006;20:487-492
217. Casarett DJ, Teno J, HIGGINSON IJ. How should nations
measure the quality of end-of-life care for older adults?
Recommendations for an international minimum dataset.
Journal of the American Geriatric Society 2006;54:1765-1771
218. Dawes H, Scott OM, Roach NK, WADE DT. Exertional
symptoms and exercise capacity in individuals with brain injury.
Disability and Rehabilitation 2006;28:1243-1250
219. Dawes H, Korpershoek N, Freebody J, Elsworth C, van
Tintelen N, WADE DT, Izadi H, Jones DH. A pilot randomised
controlled trial of a home-based exercise programme aimed at
improving endurance and function in adults with neuromuscular
disorders. Journal of Neurology, Neurosurgery and
Psychiatry 2006;77:959-962
220. Decker SL, HIGGINSON IJ. A tale of two cities: factors
affecting place of cancer death in London and New York.
European Journal of Public Health 2006:doi:10.1093/eurpub/
ckl243
221. EVANS AR, Wiggins RD, Mercer CH, Bolding GJ, Elford J.
Men who have sex with men in Britain: comparison of a selfselected
internet sample with a national probability sample.
Sexually Transmitted Infections 2006;doi:10.1136/sti.
s006.023383
222. Farmer SA, HIGGINSON IJ. Chest pain: physician
perceptions and decision making in a London emergency
department. Annals of Emergency Medicine 2006;48:77-85
223. Farmer SA, Roter DL, HIGGINSON IJ. Chest pain:
communication of symptoms and history in a London
emergency department. Patient Education and Counseling
2006;63:138-144
224. Gage H, Kaye J, Owen C, Trend P, WADE DT. Evaluating
rehabilitation using cost-consequences analysis: an example
of Parkinson's disease. Clinical Rehabilitation 2006;20:232-238
225. GOMES B, HIGGINSON IJ. Factors influencing death at
home in terminally ill patients with cancer: systematic review.
British Medical Journal 2006;332:515-521
226. Grande G, FARQUHAR MC, BARCLAY SIG, Todd CJ.
The influence of patient and carer age in access to palliative
care services. Age and Ageing 2006;35:267-273
227. HALL S, Reid E, Marteau TM. Attitudes towards sex
selection for non-medical reasons: a review. Prenatal Diagnosis
2006;26:619-626
228. HALL S, Bishop AJ, Marteau TM. Does changing the
order of threat and efficacy information influence the persuasiveness
of threat messages? British Journal of Health
Psychology 2006;11:333-43
229. HARDING R, Molloy T, Easterbrook P, Frame K,
HIGGINSON IJ. Is antiretroviral therapy associated with
symptom prevalence and burden? International Journal of STD
& AIDS 2006;17:400-405
230. Harley C, Boyd JE, Cockburn J, Collin C, Haggard P,
Wann JP, WADE DT. Disruption of sitting balance after stroke:
influence of spoken output. Journal of Neurology, Neurosurgery
and Psychiatry 2006;77:674-676
231. HIGGINSON IJ, HART S, Silber E, BURMAN R,
EDMONDS PM. Symptom prevalence and severity in people
severely affected by Multiple Sclerosis. Journal of Palliative
Care 2006;22:158-165
232. HIGGINSON IJ, VIVAT B, Silber E, SALEEM T, BURMAN
R, HART S, EDMONDS PM. Study protocol: delayed intervention
randomised controlled trial within the Medical Research
Council (MRC) Framework to assess the effectiveness of a new
palliative care service. BMC Palliative Care 2006;5:7
233. HUGHES RA, HIGGINSON IJ. Discussion of quality and
audit in health. Journal of Health and Social Policy 2006;22:29-
38
234. JACKSON D, Horn S, Kersten P, TURNER-STOKES L.
A pictorial scale of pain intensity (SPIN) for patients with
communication impairments. International Journal of Therapy
and Rehabilitation 2006;13:457-463
46

235. Khan F, McPhail T, Brand C, TURNER-STOKES L,
Kilpatrick T. Multiple sclerosis: disability profile and quality of
life in an Australian community cohort. International Journal of
Rehabilitation Research 2006;29:87-96
236. KOFFMAN J. The language of diversity: controversies
relevant to palliative care research. European Journal of
Palliative Care 2006;13:18-21
237. Low J, Cloherty M, Wilkinson S, BARCLAY SIG, Hibble A.
A UK-wide postal survey to evaluate palliative care education
amongst General Practice Registrars. Palliative Medicine
2006;20;463-469
238. MAGEE WL, Brumfitt SM, Freeman M, Davidson JW. The
role of music therapy in an interdisciplinary approach to
address functional communication in complex neurocommunication
disorders: a case report. Disability and
Rehabilitation 2006;28:1221-1229.
239. Mpinga EK, Pennec S, GOMES B, Cohen J, HIGGINSON
IJ, Wilson D, Rapin C-H. First International Symposium on
places of death: an Agenda or the 21st Century. Journal of
Palliative Care 2006;22:293-296
240. MURTAGH FEM, ADDINGTON-HALL JM, Donohoe P,
HIGGINSON IJ. Symptom management in patients with
established renal failure managed without dialysis. EDTNA/
ERCA Journal 2006;32:93-98
241. MURTAGH FEM, Murphy E, Shepherd KA, Donohoe P,
EDMONDS PM. End-of-life care in end-stage renal disease:
renal and palliative care. British Journal of Nursing 2006;15:8-11
242. MURTAGH FEM, Thorns A. Exploring patient preferences:
evaluation of a tool to help clinicians explore patient
preferences for information and involvement in decisions.
Journal of Medical Ethics 2006;32:311-315
243. Pappas G, Wolf RC, Morineau G, HARDING R. Validity of
survey questionnaire items related to pain and symptoms in
HIV/AIDS infected households in resources poor settings:
results from Dominican Republic and Cambodia. BMC
Palliative Care 2006;5:3
244. Potter S, Leigh E, WADE DT, Fleminger S. The Rivermead
Post Concussion Symptoms questionnaire. A confirmatory
factor analysis. Journal of Neurology 2006;253:1603-1614
245. Price A, Hotopf M, HIGGINSON IJ, Monroe B, Henderson
M. Psychological services in hospices in the UK and Republic
of Ireland. Journal of the Royal Society of Medicine
2006;99:637-639
246. Sackley C, WADE DT, Mant D, Atkinson JC, Yudkin P,
Cardoso K, Levin S, Blanchard V, Reel K. Cluster randomized pilot
controlled trial of an occupational therapy intervention for
residents with stroke in UK care homes. Stroke 2006;37:2336-
2341
247. Saini T, MURTAGH FEM, Dupont PJ, McKinnon PM,
Hatfield P, Saunders Y. Comparative pilot study of symptoms
and quality of life in cancer patients and patients with end
stage renal disease. Palliative Medicine 2006;20:631-636
249. Smeets rjem, WADE DT, Hidding A, Van Leeuwen PJCM,
Vlaeyen JWS, Knottnerus JA. The association of physical
deconditioning and chronic low back pain: a hypothesisorientated
systematic review. Disability and Rehabilitation
2006;28:673-693
250. Solano JP, GOMES B, HIGGINSON IJ. A comparison of
symptom prevalence in far advanced cancer, AIDS, heart
disease, chronic obstructive pulmonary disease (COPD), and
renal disease. Journal of Pain and Symptom Management
2006;31:58-69
251. TURNER-STOKES L, Paul S, WILLIAMS H. Efficiency of
specialist rehabilitation in reducing dependency and costs of
continuing care for adults with complex acquired brain injuries.
Journal of Neurology, Neurosurgery and Psychiatry
2006;77:634-639
252. TURNER-STOKES L, JACKSON D. Assessment of
shoulder pain in hemiplegia: Sensitivity of the ShoulderQ.
Disability and Rehabilitation 2006;28:389-395
253. van den Berg M, Dawes H, WADE DT, Newman M,
Burridge J, Izadi H, Sackley CM. Treadmill training for
individuals with multiple sclerosis: a pilot randomised trial.
Journal of Neurology, Neurosurgery and Psychiatry
2006;77:531-533
254. Vogt F, HALL S, Marteau TM. General practitioners’
beliefs about effectiveness and intentions to prescribe smoking
cessation medications: qualitative and quantitative studies.
BMC Public Health 2006;6:277
255. WADE DT, Makela PM, House H, Bateman C, Robson P.
Long-term use of a cannabis-based medicine in the treatment
of spasticity and other symptoms in multiple sclerosis. Multiple
Sclerosis 2006;12:639-645
256. WADE DT. Clinical Rehabilitation, past and future.
Editorial. Clinical Rehabilitation 2006;20:1-3
257. WADE DT. Why physical medicine, physical disability and
physical rehabilitation? We should abandon Cartesian dualism.
Editorial. Clinical Rehabilitation2006;20:185-190
258. WADE DT. Rehabilitation omniana. Editorial. Clinical
Rehabilitation 2006;20:1021-1022
259. WADE DT. Rehabilitation in practice: a new section in
Clinical Rehabilitation. Editorial. Clinical Rehabilitation
2006;20:93-96
260. Winkens I, Van Heugten C, Fasotti L, Duits AA, WADE DT.
Manifestations of mental slowness in the daily life of patients
with stroke: a qualitative study. Clinical Rehabilitation
2006;20:827-834
261. Wu HY, MALIK FA, HIGGINSON IJ. End of life content in
geriatric textbooks: what is the current situation? BMC
Palliative Care 2006;5:5
248. Skinner A, TURNER-STOKES L. The use of standardized
outcome measures in rehabilitation centres in the UK. Clinical
Rehabilitation 2006;20:609-615
47

BOOKS
262. Bruera E, HIGGINSON IJ, Ripamonti C, von Gunten C
(Eds). Textbook of Palliative Medicine. London: Hodder Arnold,
2006
BOOK CHAPTERS
263. BURMAN R. Neurological diseases. In: Bruera E,
HIGGINSON IJ, Ripamonti C, von Gunten C (Eds). Textbook of
Palliative Medicine. London: Hodder Arnold. 2006, pp911-917
264. Ford-Carleton P, Lugn N, Colquitt N, Reissig M,
HIGGINSON IJ, Kvedar JC. Congestive heart failure. In:
Wootton R, Dimmick SL, Kvedar JC (Eds). Home Telehealth:
Connecting Welfare Within the Community. London: Royal
Society of Medicine Press Ltd. 2006, pp184-197
265. HIGGINSON IJ. Challenges of research in palliative
medicine. In: Bruera E, HIGGINSON IJ, Ripamonti C, von
Gunten C (Eds). Textbook of Palliative Medicine. London:
Hodder Arnold. 2006, pp163-170
266. HIGGINSON IJ, von Gunten CF. Population-based needs
assessment for patient and family care. In: Bruera E,
HIGGINSON IJ, Ripamonti C, von Gunten C (Eds). Textbook of
Palliative Medicine. London: Hodder Arnold. 2006, pp251-258
267. KOFFMAN J. Transcultural and ethnic issues at the end of
life. In: Cooper J (Ed). Stepping Into Palliative Care 1: Relationships
and Responses. 2nd Edition. Oxford: Radcliffe
Publishing. 2006, pp171-186
268. KOFFMAN J, MURTAGH FEM. Ethics in palliative care
research. In: Bruera E, HIGGINSON IJ, Ripamonti C, von
Gunten C (Eds). Textbook of Palliative Medicine. London:
Hodder Arnold. 2006, pp192-201
269. MALIK FA, HIGGINSON IJ. Quality of life at the end of
life. In: Rose BD (Ed). UpToDate Wellesley, MA. 2006
270. MAGEE WL, Wheeler B. Music Therapy for Patients with
Traumatic Brain Injury. In: Murrey G (Ed). Alternative Therapies in
the Treatment of Brain Injury and Neurobehavioural Disorders: A
Practical Guide. NY: Haworth Press 2006, pp51-74.
271. MURTAGH FEM, HIGGINSON IJ. Cancer neuropathic
pain. In: Bennett M (Ed). Neuropathic Pain. Oxford Pain
Management Library. Oxford: Oxford University Press. 2006,
pp67-75
272.Schaefer S, Murrey MA, MAGEE WL, Wheeler B. Melodic
Intonation Therapy with Brain-Injured Patients. In: Murrey G
(Ed). Alternative Therapies in the Treatment of Brain Injury and
Neurobehavioural Disorders: A Practical Guide. NY: Haworth
Press 2006, pp75-87.
273. Von Gunten CF, HIGGINSON IJ. The future of palliative
medicine. In: Bruera E, HIGGINSON IJ, Ripamonti C, von
Gunten C (Eds). Textbook of Palliative Medicine. London:
Hodder Arnold. 2006, pp77-82
REPORTS
274. JACKSON D, TURNER-STOKES L, McPHERSON K,
Leese M, Murray J, McCrone P. Acquired Brain Injury: Impact
on Carers. Report to the Department of Health. May 2006
275. MAGEE WL, Burland K. Exploring the use of electronic
music technologies in clinical music therapy: Establishing
definitions and scope of practice. Final report, September
2006. London: Royal Hospital for Neuro-disability.
276. TURNER-STOKES L. The Northwick Park Therapy
Dependency Score (NPTDA): Development, preliminary
evaluation and application. Department of Health R&D Project
Grant Report ref 030/0066; 2006.
RESEARCH LETTERS
277. HARDING R, MURTAGH FEM. Palliative care for
management of small-cell lung cancer. The Lancet
2006;367:474
278. Karavitaki N, Wass J, Henderson Slater JD, WADE DT. A
case of post traumatic isolated ACTH deficiency with
spontaneous recovery 9 months after the event. Journal of
Neurology, Neurosurgery, and Psychiatry 2006;77:276-277
PUBLICATIONS IN OTHER JOURNALS
279. HARDING R. Palliative care. A basic human right.
Editorial. Id21 Insights Health 2006;February:1-2
280. JACKSON D, Horn S, Kersten P, TURNER-STOKES L.
Development of a pictorial scale of pain intensity for patients
with communication impairments: initial validation in a general
population. Clinical Medicine 2006;6:580-585
281. KOFFMAN J. Thursday’s child has far to go. Comment.
European Journal of Palliative Care 2006;13:223
282. MAGEE WL. Music Therapy in Rehabilitation: A
Perspective from the UK. [Contribution to Moderated
Discussions] Voices: A World Forum for Music Therapy 2006.
Retrieved from http://www.voices.no/discussions/discm56_
01.html
283. MAGEE WL. Review of ‘Music Therapy and Neurological
Rehabilitation’, David Aldridge (Ed). Australian Journal of Music
Therapy 2006;17:102-104.
284. Thomas V, SALEEM T, Richardson A. Does bilingual
advocacy improve Bengali patients’ satisfaction with cancer
services? Cancer Nursing Practice 2006;5:25-32
285. TURNER-STOKES L, HARDING R, Sergeant J, Lupton
C, McPHERSON K. Generating the evidence base for the
National Service Framework for Long Term Conditions: a new
research typology. Clinical Medicine 2006;6:91-97
48

PUBLISHED ABSTRACTS
286. ADDINGTON-HALL JM, Young A, Rogers A, SALEEM T.
The last three days of life of a random sample of people who
died in the South of England following a stroke: views of
bereaved relatives. Palliative Medicine 2006;20:245
287. BAUSEWEIN C, FARQUHAR MC, GYSELS M,
HIGGINSON IJ, BOOTH S. Measurement of breathlessness on
palliative care: a systematic review. Palliative Medicine
2006;20:331
288. EDMONDS PM, BURMAN R, Silber E, HART S,
HIGGINSON IJ. Evaluation of a novel palliative care service for
patients severely affected by multiple sclerosis. Palliative
Medicine 2006;20:245
289. EDMONDS PM, BURMAN R, Silber E, HART S,
HIGGINSON IJ. Are there differences between those patients
severely affected by multiple sclerosis included in and
excluded from a randomised controlled trial of a new palliative
care service? Palliative Medicine 2006;20:354
290. Ewing G, Rogers M, BARCLAY SIG, McCabe J, Campbell
M, Todd C. Home based palliative care patients: how well do
lay carers estimate their symptoms? Palliative Medicine
2006;20:152-153
291. FARQUHAR MC, BOOTH S, Fagan P, HIGGINSON IJ.
Patients’ and carers’ perception of a breathlessness intervention
service for intractable breathlessness. Palliative Medicine
2006;20:144
292. FARQUHAR MC, BOOTH S, GYSELS M, Fagan P,
HIGGINSON IJ. Patients’ and carers’ perceptions of a
breathlessness intervention service for intractable breathlessness.
Family Practice 2006;23:105
293. GOMES B, HIGGINSON IJ. What is the evidence on the
factors shaping place of death in cancer? Palliative Medicine
2006;20:264
294. GOMES B, HIGGINSON IJ. Dying at home: making it an
achievable end. Journal of Palliative Care 2006;22:203
295. Grande GE, FARQUHAR MC, BARCLAY SIG, Todd CJ.
Self reported quality of life and survival in palliative lung and
colorectal cancer patients. Palliative Medicine 2006;20:137
296. Grande F, Todd C, FARQUHAR MC, BARCLAY SIG.
The role of self reported Quality of Life in prediction of survival:
A consideration of methodological issues. Palliative Medicine
2006;20:293
297. GYSELS M, SHIPMAN C, HIGGINSON IJ. “I will do it if it
will help others”: motivations and distress among patients
taking part in qualitative studies on palliative care. Palliative
Medicine 2006;20:255
298. GYSELS M, HIGGINSON IJ. Systematic review
methodology for qualitative studies: Its benefits and
challenges. Palliative Medicine 2006;20:295
299. Hall E, Bracewell A, White P, EDMONDS PM, Carey I.
Use of specialist palliative care services by chronic obstructive
pulmonary disease (COPD) patients in south east London.
Palliative Medicine 2006;20:153-154
300. HARDING R, SELMAN L, Hodson F, Coady E, Beynon T.
A mixed methods approach to generate an evidence-based
chronic heart failure palliative care service. Palliative Medicine
2006;20:246
301. HARDING R, Sherr L, Molloy T. Sampling methods in pain
and symptom research: Do online and clinic samples differ?
Palliative Medicine 2006;20:296
302. HIGGINSON IJ, Normand C, Douglas H-R, Amesbury B,
DONALDSON N. What effect does palliative day care have on
patient outcomes: a non-randomised comparison? Palliative
Medicine 2006;20:140-141
303. JACKSON D, TURNER-STOKES L, Murray J, Leese M,
McPherson K. Acquired brain injury: impact on carers. Clinical
Rehabilitation 2006;20:1106-1107
304. JACKSON D, TURNER-STOKES L, Murray J, Leese M,
Mcpherson K. Validation of the memory and behaviour
problems checklist for use in acquired brain injury. Clinical
Rehabilitation 2006;20:1112
305. KOFFMAN J, Dias A, Raval B, Burke G, Daniels C. Factors
associated with understanding palliative care: results from a
survey of oncology out-patients. Palliative Medicine
2006;20:243
306. McDermott E, SELMAN L, Clark D. Hospice and palliative
care development in India: A review of services and
experiences. Palliative Medicine 2006;20:318
307. MURTAGH FEM, HIGGINSON IJ, ADDINGTON-HALL JM.
Experience of cognitive interviewing techniques in palliative care
research. Palliative Medicine 2006;20:293
308. Rogers MS, Ewing G, BARCLAY SIG, McCabe J, Campbell
M, Todd CJ. Symptom assessment in primary palliative care: how
are we doing? Palliative Medicine 2006;20:135
309.Rogers A, ADDINGTON-HALL JM, JONES E.
Decision making for incompetent patients. Palliative Medicine
2006;20:247
310. SELMAN L, HARDING R, BEYNON T, Hodson F, Coady
E, HIGGINSON IJ. Modelling a palliative care service in heart
failure. Palliative Medicine 2006;20:139-140
311. SHIPMAN C, ADDINGTON-HALL JM, Richardson A, Ream
E, BURT J. What impact did the English national education and
support programme for District and community nurses in the
principles and practice of palliative care have on their confidence
and knowledge? Palliative Medicine 2006;20:268
312. Swann D, Whitmore D, Sugg L, EDMONDS PM, Waight C,
Jones E, Crook T, Rudgyard K. Transportation of patients with
specialist palliative care needs by a local ambulance provider –
policy shaping. Palliative Medicine 2006;20:146
313. TURNER-STOKES L. Specialised rehabilitation for
complex neurodisability - do longer stay programmes provide
value for money. Archives of Physical Medicine and Rehabilitation
2006;87:e10-e11
314. TURNER-STOKES L, Paul S, WILLIAMS H. Is rehabilitation
cost-efficient for patients with complex rehabilitation
needs following acquired brain injury? Archives of Physical
Medicine and Rehabilitation 2006;87:e11
49

315. Young A, ADDINGTON-HALL JM, Rogers A, SALEEM T.
Care at home in the last three months of life for people in the
South of England following a stroke. Views of bereaved
relatives. Palliative Medicine 2006;20:364
PUBLICATIONS - 2007
PAPERS IN SCIENTIFIC JOURNALS
316. Atijosan O, Kuper H, Rischewski D, SIMMS V, Lavy C.
Musculoskeletal impairment survey in Rwanda: design of
survey tool, survey methodology, and results of the pilot study
(a cross sectional survey). BMC Musculoskeletal Disorders
2007;8:30
317. BAUSEWEIN C, FARQUHAR M, BOOTH S, GYSELS M,
HIGGINSON IJ. Measurement of breathlessness in advanced
disease: a systematic review. Respiratory Medicine
2007:101;399-410
318. EDMONDS PM, VIVAT B, BURMAN R, Silber E,
HIGGINSON IJ. Loss and change: experiences of people
severely affected by multiple sclerosis. Palliative Medicine
2007;21:101-10
319. EDMONDS PM, VIVAT B, BURMAN R, Silber E,
HIGGINSON IJ. “Fighting for everything”: service experiences
of people severely affected by multiple sclerosis. Multiple
Sclerosis 2007;doi:10.1177/1352458506071789
320. GYSELS M, HIGGINSON IJ. Interactive technologies and
videotapes for patient education in cancer care: systematic
review and meta-analysis of randomised trials. Supportive
Care in Cancer 2007;15:7-20
321. GYSELS M, Richardson A, HIGGINSON IJ. Does the
patient-held record improve continuity and related outcomes in
cancer care: a systematic review. Health Expectations
2007;10:75-91
322. HALL S, Chitty L, Dormandy E, Hollywood A, Wildschutt
HIJ, Fortuny A, Masturzo B, Šantavý J, Kabra M, M R, Marteau
TM. Undergoing prenatal screening for Down’s syndrome:
presentation of choice and information in Europe and Asia.
European Journal of Human Genetics 2007;doi:10.1038/sj.
ejhg.5201790
323.HALL S, Reid E, Ukoummune OC, Weinmann J, Marteau
TM. Brief smoking cessation advice from practice nurses
during routine cervical smear test appointments: a cluster
randomised controlled trial assessing feasibility, acceptability
and potential effectiveness. British Journal of Cancer
2007;96:1057-1061
324. HARDING R, Dinat N, Mpanga Sebuyira L. Measuring and
improving palliative care in South Africa: multi–professional
clinical perspectives on development and application of
appropriate outcome tools. Progress in Palliative Care
2007;15:55-59
325. HIGGINSON IJ, Davies E, Tsouros A. The end of life:
unknown and unplanned? European Journal of Public Health
2007;doi:10.1093/Eurpub/ckm003
326. HIGGINSON IJ, HART S, KOFFMAN J, SELMAN L,
HARDING R. Needs assessment in palliative care: an appraisal
of definitions and approaches used. Journal of Pain and
Symptom Management 2007;33:500-505
327. Khan F, TURNER-STOKES L, Ng L, Kilpatrick T. Multidisciplinary
rehabilitation for adults with multiple sclerosis
(Review). Cochrane Database of Systematic Reviews 2007,
Issue 2; CD006036. DOI 10.1002/14651858.CD006036.pub2
328. KOFFMAN J, Burke G, Dias A, Raval B, Byrne J, Gonzalez
J, Daniels C. Demographic factors and awareness of palliative
care and related services. Palliative Medicine 2007;21:145-153
329. MAGEE WL, Andrews K. Multi-disciplinary perceptions of
music therapy in complex neuro-rehabilitation. International
Journal of Therapy and Rehabilitation 2007;14:70-75.
330. MAGEE WL. Electronic technologies in clinical music
therapy: a survey of practice and attitudes. Technology and
Disability 2007;18:139-146
331. MURTAGH FEM, ADDINGTON-HALL JM, HIGGINSON IJ.
The prevalence and symptoms in end-stage renal disease: a
systematic review. Advances in Chronic Kidney Disease
2007;14:82-99
332. MURTAGH FEM, ADDINGTON-HALL JM, HIGGINSON IJ.
The value of cognitive interviewing techniques in palliative care
research. Palliative Medicine 2007;21:87-93
333. MURTAGH FEM, Marsh JE, Donohoe P, Ekbal NJ,
Sheerin NS, Harris FE. Dialysis or not? A comparative survival
study of patients over 75 years which chronic kidney disease
stage 5. Nephrology, Dialysis and Transplantation
2007;doi:10.1093/ndt/gfm153
334. Newman MA, Dawes H, van den Berg M, WADE DT,
Burridge J, Izadi H. Can aerobic treadmill training reduce the
effort of walking and fatigue in people with multiple sclerosis: a
pilot study. Multiple Sclerosis 2007;13:113-119
335. Powell RA, Downing J, HARDING R, Mwangi-Powell F,
Connor S. Development of the APCA African Palliative
Outcome Scale. Journal of Pain and Symptom Management
2007;33:229-232
336. Sackley C, Disler PB, TURNER-STOKES L, WADE DT.
Rehabilitation interventions for foot drop in neuromuscular
disease (Review). Cochrane Database of Systematic Reviews
2007, Issue 2; CD003908. DOI 10.1002/14651858.CD003908.
pub2
337. SELMAN L, HARDING R, Beynon T, Hodson F, Coady E,
Hazeldine C, Walton M, Gibbs LME, HIGGINSON IJ. Improving
end of life care for chronic heart failure patients – “Let’s hope
it’ll get better, when I know in my heart of hearts it won’t”. Heart
BMJ 2007;doi:10.1136/hrt.2006.106518
338. Shabab L, HALL S, Marteau TM. Showing smokers with
vascular disease images of their arteries to motivate cessation: a
pilot study. British Journal of Health Psychology 2007;12:275-283
339. Winward CE, Halligan PW, WADE DT. Somatosensory
recovery: a longitudinal study of the first 6 months after
unilateral stroke. Disability and Rehabilitation 2007;29:293-299
50

BOOKS
340. ADDINGTON-HALL JM, Bruera E, HIGGINSON IJ,
Payne S. (Eds) Research Methods in Palliative Care Oxford:
Oxford University Press, 2007
BOOK CHAPTERS
341. COSTANTINI M, HIGGINSON IJ. Experimental and
quasi-experimental designs. In: ADDINGTON-HALL JM,
Bruera E, HIGGINSON IJ, Payne S (Eds). Research Methods in
Palliative Care Oxford: Oxford University Press. 2007;pp85-97
342. HIGGINSON IJ, GYSELS M. Systematic reviews. In:
ADDINGTON-HALL JM, Bruera E, HIGGINSON IJ, Payne S
(Eds). Research Methods in Palliative Care Oxford: Oxford
University Press, 2007:pp115-136
343. HIGGINSON IJ, HARDING R. Outcome measurement. In:
ADDINGTON-HALL JM, Bruera E, HIGGINSON IJ, Payne S
(Eds). Research Methods in Palliative Care Oxford: Oxford
University Press. 2007;pp99-113
344. SPECK PW. How to gain research ethics approval. In:
ADDINGTON-HALL JM, Bruera E, HIGGINSON IJ, Payne S
(Eds). Research Methods in Palliative Care Oxford: Oxford
University Press. 2007;pp275-282
RESEARCH LETTERS
345. HARDING R, Gwyther L, Mwangi–Powel F. Treating HIV/
AIDS patients until the end of life. Journal of Acquired Immune
Deficiency Syndrome 2007;44:364-365
346. Minton O, HIGGINSON IJ. Electroacupuncture as an
adjunctive treatment to control neuropathic pain in patients
with cancer. Journal of Pain and Symptom Management
2007;33:115-117
REPORTS
347. Royal College of Physicians. The changing face of renal
medicine in the UK: the future of the speciality. (Contribution by
FEM MURTAGH) Report of a Working Party. London: RCP, 2007
PUBLICATIONS IN OTHER JOURNALS
348. HARDING R, Dinat N, MPanga–Sebuyira. Measuring and
improving palliative care in South Africa: multi–professional
clinical perspectives on development and application of
appropriate outcome tools. Progress in Palliative Care
2007;15:55-59
349. MAGEE WL. A comparison between the use of songs and
improvisation in music therapy with adults living with acquired
and chronic illness. Australian Journal of Music Therapy
2007;www.austmta.org.au/downloadabledocs/2007ajmtvol18/
magee2007_vol18_inpress%20(2).doc
350. SELMAN L. Yoga in palliative care. A Winston Churchill
Fellowship in India. Yoga and Health Magazine 2007.
351. TURNER-STOKES L, Sykes N, Silber E, Sutton L, Young
E. From diagnosis to death: exploring the interface between
neurology, rehabilitation and palliative care in managing people
with long term neurological conditions. Clinical Medicine
2007;7:129-136
MEETING ABSTRACTS
352. BAUSEWEIN C, BOOTH S, GYSELS M, HIGGINSON IJ.
Non-pharmacological interventions for breathlessness in
advanced stages of malignant and non-malignant diseases: a
Cochrane review. European Journal of Palliative Care 2007:
EAPC
353. Beccaro M, COSTANTINI M, Merlo F. Inequity in the
provision of and access to palliative care services for cancer
patients in Italy. Results from the Italian survey of the dying of
cancer (ISDOC). European Journal of Palliative Care 2007:
EAPC
354. COSTANTINI M, Morasso G, Beccaro M. High prevalence
of depressive symptoms among Italian surviving caregivers.
Results from the Italian Survey of the dying of cancer (ISDOC).
European Journal of Palliative Care 2007:EAPC
355. Douglas C, Ellershaw J, MURTAGH FEM, Chambers J,
Meyer M, Howse M, Chesser A, Gomm S, EDMONDS PM,
Murphy D. Adapting the Liverpool Care of the Dying Pathway
for patients dying of end stage renal disease: a national pilot.
European Journal of Palliative Care 2007:EAPC
356. Downing J, HARDING R, Powell R, Alexandra C, Cameron
S, Connor S, Defilippi K, Garanganga E, Kikule E, Mwangi-
Powell F. Use of the APCA African Palliative Outcome Scale
(POS) improves nursing assessment of palliative care patients.
European Journal of Palliative Care 2007:EAPC
357. FARQUHAR MC, BOOTH S, Fagan P, HIGGINSON IJ.
Developing a breathlessness intervention service using the
MRC framework for the development and evaluation of
complex interventions. European Journal of Palliative Care
2007:EAPC
358. FARQUHAR MC, Grande G, BARCLAY SIG, Todd C.
Carers’ health, functional status and caregiver burden in end of
life care: trajectories, interrelationships and relation to cancer
patients’ status. European Journal of Palliative Care 2007:
EAPC
359. GOMES B, GYSELS M, HIGGINSON IJ. Reporting
cancer and dying in the news: a study of Portuguese
newspapers and magazines. European Journal of Palliative
Care 2007:EAPC
360. GOMES B, HIGGINSON IJ. How and where will we die by
2030: an analysis of future needs in an ageing population.
European Journal of Palliative Care 2007:EAPC
361. Gwyther L, HARDING R, SELMAN L, Mashao T, Dinat N,
Mpanga-Sebuyira L, Mmoledi K, Agupio G, Gillespie C,
Panatovic B. Symptom prevalence and factors associated with
burden indices among palliative care patients: a multicentre
study in 2 Sub-Saharan African countries. European Journal of
Palliative Care 2007:EAPC
362. GYSELS M, HIGGINSON IJ. Coping with breathlessness
through self-management by COPD patients. European Journal
of Palliative Care 2007:EAPC
51

363. HARDING R, Panatovic B, Agupio G, Gillespie C, Mashao
T, Mmoledi K, Ndlovu P, Dinat N, Gwyther L, Mpanga-Seburia
L. Measuring pain and symptoms in resource-poor settings: a
comparison of verbal, visual and hand scoring methods in
Sub-Saharan Africa. European Journal of Palliative Care 2007:
EAPC
364. HARDING R, SELMAN L, Beynon T, Hodson F, Coady E,
Hazeledene C, HIGGINSON IJ. Improving end of life care for
chronic heart failure patients: let’s hope it’ll get better, when I
know in my heart of hearts it won’t? European Journal of
Palliative Care 2007:EAPC
365. HIGGINSON IJ. Guidelines for depression in palliative
care: current challenges and research agenda. Representing
the EPCRC research group. European Journal of Palliative Care
2007:EAPC
366. HIGGINSON IJ. Developing a common language towards
consensus based quality palliative care – Why are definitions
important? European Journal of Palliative Care 2007:EAPC
367. KOFFMAN J, Morgan M, EDMONDS PM, HIGGINSON IJ.
Culture and pain: a qualitative study of Caribbean and white
British patients with advanced cancer living in London. European
Journal of Palliative Care 2007:EAPC
368. LONGHURST S, KOFFMAN J, SHIPMAN C, Taylor E,
Dewar S. Dying for information: an evaluation of a telephone
helpline for patients with advanced disease and their families.
European Journal of Palliative Care 2007:EAPC
369. LONGHURST S, KOFFMAN J, SHIPMAN C, Taylor E,
Dewar S. A learning curve: developing and operating a
telephone helpline for patients with advanced disease and their
families and professional carers. European Journal of Palliative
Care 2007:EAPC
370. MURTAGH FEM, ADDINGTON-HALL JM, EDMONDS
PM, Donohoe P, Jenkins K, HIGGINSON IJ. Renal patients
have symptoms too – a cross-sectional survey of symptoms in
stage 5 chronic kidney disease managed without dialysis.
European Journal of Palliative Care 2007:EAPC
371. Perkins P, BOOTH S, Vowler S, BARCLAY SIG. What are
patients’ research priorities for palliative care? European
Journal of Palliative Care 2007:EAPC
372. Pilkington G, KOFFMAN J. Appetite loss in advanced
cancer – the informal caregivers’ perspective. European
Journal of Palliative Care 2007:EAPC
373. Rapisarda E, Bertone G, Beccaro M, COSTANTINI M.
Dissatisfaction with home and hospital care during the last
three months of life of Italian cancer patients. European Journal
of Palliative Care 2007:EAPC
374. Remi C, BAUSEWEIN C. Coadministration of Metamizole
(Dipyrone), Midazolam and Morphine: compatibility and
stability. European Journal of Palliative Care 2007:EAPC
375. SALEEM T, Leigh N, HIGGINSON IJ. Symptom
prevalence against people affected by advanced and
progressive neurological conditions – a systematic review.
European Journal of Palliative Care 2007: EAPC
376. SELMAN L, Agupio G, Gillespie C, Mashao T, Mmoledi K,
Ndlovu P, Dinat N, Gwyther L, Mpanga-Sebuyira, Panatovic B.
The needs and experiences of palliative care patients in South
Africa and Uganda. European Journal of Palliative Care 2007:
EAPC
377. SHIPMAN C, HIGGINSON IJ, GYSELS M, White P, Worth
A, Murray S, BARCLAY SIG, Forrest S, Shepherd J, Dale J.
What is end of life care? Definitions from a national consultation
and implications for practice. European Journal of
Palliative Care 2007:EAPC
378. SPECK PW, Mills M, Coleman P. Pastoral care of the
elderly: do clergy have an attitude problem? European Journal
of Palliative Care 2007:EAPC
379. SPECK PW. Team working – fulfilling or frustrating.
European Journal of Palliative Care 2007:EAPC
PUBLICATIONS IN PRESS
380. Eisenchlas JH, HARDING R, Daud ML, Pérez M, De
Simone GG, HIGGINSON IJ. Use of the Palliative Outcome
Scale in Argentina: A cross-cultural adaptation and validation
study. Journal of Pain and Symptom Management
381. GYSELS M, BAUSEWIEN C, HIGGINSON IJ.
Experiences of breathlessness: a systematic review of the
qualitative literature. Palliative and Supportive Care
382. HALL S, Marteau TM. Practice nurses’ reports of giving
opportunistic smoking cessation advice in three contexts.
Nicotine and Tobacco Research
383. JACKSON D, TURNER-STOKES L, Murray J, Leese M.
Validation of the Memory and Behavior Problems Checklist –
1990R for use in acquired brain injury. Brain Injury
384. Karus D, Raveis VH, Ratcliffe M, Rosefield Jr, HA,
HIGGINSON IJ. Health status and service needs of male
inmates seriously ill with HIV/AIDS at two large urban jails.
American Journal of Men’s Health
385. LONGHURST S, KOFFMAN J, SHIPMAN C, Taylor E,
Dewar S. Helping people access information at the end of life:
evaluating a helpline. King’s Fund Publications
386. MAGEE WL. Music as a diagnostic tool in low awareness
states: Considering limbic responses. Brain Injury
387. MAGEE WL. A comparison between the use of songs and
improvisation in music therapy with adults living with acquired
and chronic illness. Australian Journal of Music Therapy
388. MURTAGH FEM, Chai MO, Donohoe P, EDMONDS PM,
HIGGINSON IJ. The use of opioid analgesia in end-stage renal
disease patients managed without dialysis: recommendation for
practice. Journal of Pain and Palliative Care Pharmacotherapy
389. SELMAN L, HARDING R, Beynon T, Hodson F, Coady E,
Hazeldine C, Walton M, Gibbs L, HIGGINSON IJ. Improving end
of life care for chronic heart failure patients. “Let’s hope it’ll get
better, when I know in my heart of hearts it won’t”. Heart BMJ
52

390. SELMAN L, HARDING R, Hodson F, Coady E, Beynon T.
Modelling services to meet the palliative care needs of chronic
heart failure patients and their families: current practice in the
UK. Palliative Medicine
391. TURNER-STOKES L, Disler R, WILLIAMS H. The
Rehabilitation Complexity Scale: a simple, practical tool to
identify ‘complex specialised’ services in neurological
rehabilitation. Clinical Medicine
392. WILLIAMS H, Harris R, TURNER-STOKES L. Can the
Northwick Park Care Needs Assessment be used to estimate
nursing staff requirements in an in-patient rehabilitation
setting? Clinical Rehabilitation
393. WILLIAMS H, Harris R, TURNER-STOKES L. Northwick
Park Care Needs Assessment: adaptation for inpatient
neurological rehabilitation settings. Journal of Advanced
Nursing
9
Research Support
We thank the following organisations who have supported
research, teaching and development in our department. Most
funding is won through peer review grants.
Addenbrooke's Hospital
The Big Lottery UK
Cancer Research UK
Cicely Saunders International
Commission of the European Communities
Department of Health (UK)
Diana Princess of Wales Memorial Fund
Dunhill Medical Trust
Fondazione Floriani
Gatsby Foundation
Gulbenkian Foundation
Guy’s & St Thomas’ Charity
Harris HospisCare
Hospice Africa UK
Human BSE Foundation
King's Fund (London)
King's College Hospital NHS Foundation Trust
Maruzza Lefebvre D’Ovidio Foundation
Mildmay International
Multiple Sclerosis Society
National Cancer Research Institute (NCRI) – a consortium of
MRC, Department of Health, Cancer Research UK and other
charities
National Centre for NHS Service Delivery and Organisation
National Hospice Palliative Care Organization (USA)
Open Society Institute/Soros Foundation
Pfizer Ltd
President's Emergency Plan for AIDS Relief (PEPFAR)
St Christopher's Hospice
St Luke's Hospice
University College London
University of North Carolina
We also thank the following who have pledged capital support
for The Cicely Saunders Institute for Palliative Care.
The Weston Foundation
The Wolfson Foundation
Macmillan Cancer Support
PF Charitable Trust
Atlantic Philanthropies
53

10
Developments
in Staffing
During this period we welcomed many new staff, or ones
returning into more senior roles. Academic Rehabilitation,
led by Professor Lynne Turner-Stokes, joined forces
with Palliative Care in 2003, but over the last three years
the department has expanded to include a further parttime
chair (Professor Derick Wade), a Senior Lecturer,
Senior Clinical Research Fellow and four honorary
Research Fellows. Through their respective clinical
services in Northwick Park and Oxford Professors
Turner-Stokes and Wade provide a broad clinical base
for the research programme. A consortium formed in
collaboration with Professor Keith Andrews in the
Institute for Neuro-palliative Rehabilitation, Putney,
provides the largest research group for complex
neurological disability in the UK (see section 7). In
addition, two Visiting Chairs (Professor Peter Disler
(Australia) and Professor Kath McPherson (New
Zealand)) support the active research programme.
In Palliative Care, Dr Richard Harding was appointed as
a new Lecturer in Palliative Care, and was promoted to
Senior Lecturer from September 2007. Dr Sue Hall, a
health psychologist, was appointed as a new Lecturer in
Palliative Care to work on a new programme on palliative
care for older people supported by the Dunhill Medical
Trust and Cicely Saunders International. Dr Gao Wei is a
new Statistician in Palliative Care, part funded by King’s
College London and part by the new five year collaborative
in Supportive and Palliative Care from the UK
National Cancer Research Institute, which we are coleading
with colleagues across King’s, Leeds and
Edinburgh Universities. In 2007 Professor Massimo
Costantini and Professor Peter Fayers were both
appointed as Visiting Professors for a period of five
years. We also benefited from working with individuals
who spent several months with us on sabbaticals,
including Dr David Gruenewald from the United States,
Dr Joao Paulo Solano from Brazil, and medical students
Troy Cartwright and Michael Walton.
We have also said farewell to some significant members
of our group. Often they have moved on to new, more
senior posts. However, we continue to collaborate with
many individuals, because of continuing and sometimes
new projects, through honorary contracts and because
happily for us some have remained close by with King’s
College London. There are too many to mention, but
they include Professor Julia Addington-Hall, who moved
to take up a chair in End of Life Care in the School of
Nursing at the University of Southampton. Within King’s
College London, Dr Nora Donaldson was awarded a
Readership in Statistics in the School of Dentistry and
Dr Elizabeth Davies a Senior Lectureship in the Thames
Cancer Registry. We congratulated three successful
PhD graduates, Dr Jean Potter, supported for three
years from Mrs Coco Marcus, who has now taken up a
new post as consultant in palliative medicine, Dr
Christine McPherson, who is now following a career in
palliative care research in Canada, and Dr Jo Armes,
who took up a post in the School of Nursing, King’s
College London.
54

Staff Biographies
Professor Irene Higginson BMedSci BMBS FFPHM
PhD FRCP
Professor of Palliative Care and Policy,
Head of Department of Palliative Care,
Policy & Rehabilitation, Honorary Consultant
King’s College Hospital
Irene qualified in medicine from the University of
Nottingham and won her PhD from University College
London. She has extensive experience in leading
national and international multidisciplinary collaboration
in palliative care. She has dual training in palliative
medicine and epidemiology/public health having worked
in a wide range of medical settings, hospices and in
public health and health services research. For the past
ten years she has been Head of Department and
Professor of Palliative Care and Policy at King’s College
London and prior to that was Director of Research and
Development in a London health authority, as well as
Senior Lecturer at the London School of Hygiene and
Tropical Medicine. She is currently leading the
assessment strand of one of the two collaboratives in
supportive and palliative care, leading the strand on
assessment and measurement. This collaborative
(COMPASS – Complex Interventions: Assessment, Trials
and Implementation of Services) brings together over 61
Universities and associated hospitals, hospices and
other services in the UK, and seeks to foster collaboration
of research in supportive and palliative, including
end of life, cancer care. In addition, Irene co-ordinated
the production of the WHO guidance on palliative care
(Palliative Care – The Solid Facts, Better Palliative Care
for Older People). This project, undertaken for the WHO
in Europe, in collaboration with the European
Association of Palliative Care, and the European Institute
of Oncology, brought together evidence from over 15
countries and wide ranging literature to provide
guidance on ways to improve palliative care for the
future. Irene is a member of the European Palliative Care
Research Collaborative (EPCRC). She has over 180
scientific papers published in peer review journals, has
published 14 books on palliative and end of life care.
She is an advisor to many governments in research and
policy in palliative care, including recently reviewing for
the Italian Ministry of Health, as well as being an advisor
on the end of life care proposals in the United Kingdom
and led the development of the National Institute of
Clinical Excellence (NICE) Guidance for Supportive and
Palliative Care for those affected by cancer. She is
currently leading the scoping exercise for the NHS
Service Delivery and Organisation programme on
identifying the research needs on the delivery and
organisation of generalist services for end of life care.
Professor Irene Higginson
Sarah Baber
Executive Assistant to Professor Higginson /
Department Manager
Sarah is Professor Higginson’s Executive Assistant and
is usually the first point of contact for Professor
Higginson. She is also Department Manager and
manages the administrative staff.
Sarah has a BA English from Sussex University. After
graduating she worked briefly at Kingston University in
the Faculty of Health, in the Curriculum and Quality
Office. She then went onto work at London South Bank
University as a Faculty Quality Assurance Administrator
in the Faculty of Arts and Human Sciences. Sarah began
working at King’s College in July 2007.
55

Professor Lynne Turner-Stokes DM, FRCP
Herbert Dunhill Chair of Academic Rehabilitation, Head
of Department of Academic Rehabilitation
Lynne was educated at Oxford University, qualified in
Medicine at University College Hospital. After ten years
in general medicine and rheumatology she accredited in
Rheumatology and Rehabilitation, and took up her
consultant appointment to set up and direct the
Regional Rehabilitation Unit (RRU) at Northwick Park
Hospital. The unit provides tertiary specialist rehabilitation
services for younger adult patients with severe
complex disabilities, mainly resulting from acquired
brain injury. Lynne and her colleagues have built up a
co-ordinated network of specialist rehabilitation services
across North-West Thames. Within this network, the
RRU act as a central focus for research and training for
all professionals involved in rehabilitation, and has a
national and international reputation as a leading service
in the field of neurological rehabilitation.
Lynne was appointed the Herbert Dunhill Chair of
Rehabilitation at KCL in 2001, with a view to developing
a two-site academic department of rehabilitation
between KCL and Northwick Park. Academic Rehabilitation
joined forces with the Department of Palliative Care
and Policy in 2003. Her research interests include the
development of outcome measures, establishment of
the evidence base for effective intervention in rehabilitation,
and development of evidence-based guidelines
and integrated care-pathways to support best practice
in clinical care. She is on the editorial board of Clinical
Rehabilitation and is guest editor of the series ‘Concise
Clinical Guidelines’ for Clinical Medicine. Lynne has a
major interest in the development of NHS policy to
improve rehabilitation services in the NHS. Since 1997
she has led on the development of guidelines and
clinical standards for the British Society of Rehabilitation
Medicine. From 2002-5 she was the Deputy Chair and
Clinical Lead of the External Reference Group of the
National Service Framework (NSF) for Long Term
Conditions, and continues as advisor to the Department
of Health, providing in lead role in rehabilitation and
research towards implementation of the NSF. She is
committed to enhancing the quality of rehabilitation and
support services for patients with chronic disability and
also to championing the views of users and carers in
development of better services for the future.
Stephen Ashford MSc MCSP
Clinical Specialist in Physiotherapy
Steve qualified in Physiotherapy at Salford University
1993 and undertook a part-time MSc in Neurorehabilitation
at Brunel University between 1996 and 1998. He
was a sessional lecturer at Brunel University, while
working clinically, and undertaking a Post Graduate
Certificate in Education between 1998 and 2001. He
became course co-ordinator for the MSc in Neurorehabilitation
at Brunel University from 2001 until 2003, while
working clinically on the Regional Rehabilitation Unit,
Northwick Park Hospital. In October 2003, he moved full
time to the Regional Rehabilitation Unit, Northwick Park
Hospital to conduct research on the functional
evaluation of outcome following spasticity management
intervention. Steve is currently registered for a PhD at
King’s College London, Department of Palliative Care,
Policy and Rehabilitation. Research interests include the
evaluation and measurement of functional outcome in
the upper limb following focal interventions and this is
the focus of his PhD thesis. Other research interests
include evaluation of the effectiveness of botulinum toxin
intervention in the hemiparetic upper limb and
management of complex disability.
Stephen’s current clinical role involves co-ordinating the
outreach service from the Regional Rehabilitation Unit at
Northwick Park Hospital Harrow and the related
spasticity management service. The service provides
consulting input to professionals, patients and families in
the management of complex neurodisability including
spasticity.
56

Dr Stephen Barclay MA MB BCh MSc FRCGP MD
Honorary Senior Lecturer
Stephen joined the Department as an Honorary Senior
Research Associate in 2002, becoming Honorary Senior
Lecturer in Primary Palliative Care in the Department in
2006. He works as a General Practitioner in Cambridge,
where he is also Honorary Consultant Physician in
Palliative Medicine at the Cambridge Hospice, Specialty
Director for Palliative Care teaching in the Clinical School
and Macmillan Post-Doctoral Research Fellow in the
University General Practice and Primary Care Research
Unit. His research focuses on Palliative Care in the
Primary Care setting, and he has collaborated with Cathy
Shipman and Julia Addington-Hall over several years.
He was awarded the University of Cambridge Ralph
Noble prize for his MD thesis entitled "General Practitioner
provision of Palliative Care in the United Kingdom"
in 2005 and in 2006 was granted a Department of Health
/ Macmillan Post-Doctoral Fellowship, which is to be at
the Kings Department part of the time.
Dr Claudia Bausewein MD MSc
Cicely Saunders International Research Training Fellow
Claudia went to Medical School at the University of
Munich. She completed her MD on the situation of
terminally ill cancer patients on admission to hospital.
Although her background is internal medicine, she has
been involved in Palliative Care in Germany for 15 years.
She is now working as a consultant in palliative medicine
at the Interdisciplinary Centre for Palliative Medicine at
the University of Munich. Claudia is Vice-President of
the German Association for Palliative Medicine and coeditor
of the German Journal for Palliative Medicine.
Claudia completed the MSc in Palliative Care at KCL in
2003. Her research project focussed on the validation of
the German version of the Palliative Care Outcome
Scale. Through the MSc Claudia developed her interest
in research and undertook more training in research
methods. She is currently undertaking a PhD funded by
Cicely Saunders International focusing on breathlessness,
looking particularly into the course of breathlessness
in patients with COPD or cancer and their relatives.
Within her PhD Claudia conducted a systematic review
on measurement of breathlessness and is currently
undertaking a Cochrane Review on non-pharmacological
interventions in breathlessness in advanced disease.
Besides breathlessness her main research and clinical
interests are palliative medicine for non-oncological
patients, pharmacotherapy and subcutaneous
application of drugs.
57

Sian Best BA
Department Administrator
Sian has a BA Hons from the University of Warwick.
After spending a year in postgraduate teacher training,
she decided that she would prefer a career in publishing.
She has worked mainly in publishing, initially in
marketing and public relations, and then as a picture
researcher and picture editor for national newspapers
and magazines. She was also a company secretary. She
joined King’s College London part time in 2005, helping
to organise a series of conferences for the Social Care
Workforce Research Unit, and moved to the Department
of Palliative Care, Policy & Rehabilitation in July 2005.
She is responsible for the administration of the MSc, PG
Diploma and PG Certificate in Palliative Care. There are
currently 49 students enrolled on the course. Sian is also
responsible for the administration of research grants,
financial transactions including purchasing, and for the
general administration of the department.
Dr Sara Booth FFARCSI and FRCP
Honorary Senior Lecturer
Sara joined the Department in 2003 as an Honorary
Senior Research Fellow, becoming an Honorary Senior
Lecturer in Palliative Care in 2006. She is a Lead Clinician
at Cambridge University NHS Hospitals Foundation Trust
where she was appointed to set up a multi-disciplinary
palliative care service. Sara has had an interest in
breathlessness since her first post in palliative care at St
Christopher’s Hospice in 1991 and has researched the
topic of clinical management of breathlessness since
then. This work led to the development of a Breathlessness
Intervention Service at Addenbrooke’s which started
seeing patients in 2003 and led to the collaboration with
Professor Irene Higginson at King’s College London to
research its effectiveness. During 2006/7 she has been
the holder of a SuPaC Award to help develop her skills in
clinical trials and research.
Toki Allison
Secretary / Transcriber
After working in both the care and service industries,
Toki gained a Foundation Degree in Media Practice at
the London College of Communication, University of the
Arts. She joined the department in August 2007 to assist
as transcriber and secretary, specifically assigned to aid
those researching the effects of the Gold Standards
Framework for Care Homes.
Dr Sara Booth
58

Dr Rachel Burman FRCP MA
Consultant in Palliative Care, Honorary Senior Lecturer
Rachel has been a consultant in palliative care since 1997.
She is working part time with the palliative care team at
King’s College Hospital Foundation Trust where she leads
on the development of palliative care for people with
neurodegenerative disorders and is a member of the multiprofessional
MND Centre. She worked in cardiology and
neurology before entering a career in palliative care. This
has left a commitment to the palliative care needs of
patients with a non-malignant diagnosis. She has just
finished as the lead consultant on a research project
funded by the MS Society looking at the needs of people
severely affected by MS and their carers. A Masters in
Medical Law and Ethics informs her interest in planning
and decision making in advanced disease and also the
relevance of the Human Rights Act to healthcare provision.
She is a collaborator on an ongoing research project
funded by the Department of Health Defining the Palliative
Care Needs of People with late stage Parkinsonism. She is
a member of the Management and Scientific Board of the
King’s Centre for Palliative Care in Neurology.
Emma Camplejohn BSc
Project Assistant
Emma has a BSc Geography degree from Queen
Mary's, University of London. She joined King's after
completing her degree in July 2005 and is currently
working as the Project Assistant for Dr Richard Harding
and Dr Marjolein Gysels who have a number of research
interests in palliative care.
59

Jo Clark
Research PA to Professor Lynne Turner-Stokes
Jo is the PA to Professor Lynne Turner-Stokes, working
between sites of Northwick Park Hospital and the
Weston Education Centre. She has qualifications at HNC
level in Business and Computer Management. Previous
to working for King’s College London Jo was the Clerical
Assistant for the Therapy Teams on the Regional
Rehabilitation Unit based at Northwick Park Hospital.
She has also worked in varying positions in other multiprofessional
organisations.
Professor Massimo Costantini MD
Visiting Professor
Massimo qualified in medicine in 1985 at the University
of Genoa (Italy). He spent the next five years specialising
in oncology and training in clinical epidemiology at the
National Cancer Institute (IST) of Genoa.
Since 1990 his main interests have focused on palliative
care. He worked as a palliative home care physician, at
the G Ghirotti Association of Genoa for two years. Since
1992, when he was appointed as full time consultant
epidemiologist at the Clinical Epidemiology Unit of the
National Cancer Institute, his research interests have
increasingly focused on the areas of palliative care,
quality of life, and psycho-oncology. He has published
over 80 papers in peer-reviewed journals, and a number
of book chapters on methodological aspects of palliative
care research. His recent research activities have
focused on studying multidimensional problems of
terminal cancer patients and on investigating the effect
of palliative care services on quality of care. He co-ordinated
the Italian Survey of the Dying of Cancer (ISDOC),
a post bereavement Italian survey that is providing a
national picture of the problems experienced by terminal
cancer patients and of the type and quality of provided
care. As first step of a project funded by the Ministry of
Health, he is co-ordinating the first Italian implementation
of the Liverpool Care Pathway (LCP) for the dying in
an Italian hospital. The programme involves a clusterrandomised
trial aimed at assessing the effectiveness of
LCP in improving the quality of end-of-life care in
hospital.
Massimo is involved in Health Service development and
assessment. He was a member of the study group of the
Italian Ministry of Health that developed the national
guidelines and standards for palliative care organisation.
At present, he is co-ordinator of the regional group for
development of the Palliative Care Network, with the
mission to implement for each of the five Local Health
Districts of Liguria a network of specialised palliative
care services, quality assurance and total quality
management programmes and, according to different
60

needs, educational programmes in palliative care.
Massimo is a member of the Scientific Committee of the
Maruzza Lefebvre d’Ovidio Foundation (Rome) leading
the development of a qualified programme of research
and teaching in palliative care. From 2002 to 2004 he
was Medical Director of the “G Ghirotti” Hospice of
Genoa. In 2007, he was appointed Visiting Professor in
Palliative Care at the Department of Palliative Care,
Policy and Rehabilitation, at King’s College London.
Dr Polly Edmonds MBBS FRCP
Consultant in Palliative Care, Honorary Senior Lecturer
in Palliative Medicine
Polly is a consultant and lead clinician in Palliative
Medicine at King's College Hospital NHS Trust and
honorary senior lecturer in the Department of Palliative
Care, Policy & Rehabilitation, King's College London.
She qualified from St Mary’s Hospital Medical School,
and trained in General Medicine, Medical Oncology and
Palliative Medicine prior to taking up her consultant post
in 1997. She has led the development of the clinical
Palliative Care Team at King’s and is closely involved in
the undergraduate curriculum at the King’s College
London School of Medicine, as Palliative Medicine
teaching lead, deputy head of year 4 and year 4 OSCE
coordinator. Jointly with Rachel Burman, Polly is
programme director for the London and KSS Deanery
Specialty Training Programme for Palliative Medicine.
She has previously chaired the South East London
Palliative Care coordinating Group of the South East
London Cancer Network and remains an active
participant. Her research interests include palliative care
for non-cancer patients.
Dr Alison Evans PhD MSc
Research Fellow
Alison completed her first degree in Psychology at
University College London (1983 - 1986). She taught
English in Spain and Japan and worked as a university
administrator before returning to study to complete the
MSc in Social Research Methods at City University
(2000 - 2001). She went on to pursue her interest in
research methods over the course of her PhD at City
University (2003 - 2006) where she undertook a methodological
investigation into use of the Internet as a
social research tool for collecting data on sexual
behaviour among gay and bisexual men. The PhD was
supervised by Professors Dick Wiggins and Jonathan
Elford and funded by the Economic and Social Research
Council. Following this, she took up a one-year postdoctoral
research fellowship at City University which
provided the opportunity to develop her methodological
research and publish work from her PhD thesis. She
joined the department in 2007 and is currently working
with Professors Irene Higginson and Matthew Hotopf on
the development of evidence-based clinical guidelines
for the management of depression in palliative care.
61

Dr Morag Farquhar BSc MSc PhD (Hons) RGN
Research Associate
Morag has worked in health services research for nearly
20 years, with the past 12 focusing on palliative care.
During this time she has worked for health authorities in
London, and within the universities of London,
Manchester and Cambridge. A graduate nurse by
background (King’s College London), she went on to
obtain a Masters in Medical Sociology (Royal Holloway &
Bedford New College) and PhD (QMUL) on the definition
and measurement of quality of life in older people living
at home. Research interests include palliative care,
quality of life, older people, chronic disease, informal
carers, service evaluation, breathlessness and the use of
mixed methods (qualitative and quantitative). Morag is
currently conducting an evaluation of the Breathlessness
Intervention Service at Addenbrooke’s NHS Trust in
Cambridge, modelled on the MRC Framework for the
Evaluation of Complex Interventions. She is also
collaborating on another Cambridge-based study of
‘Living and dying in extreme old age’ with colleagues in
the Department of Public Health & Primary Care,
University of Cambridge.
Professor Peter Fayers BSc PhD CSTAT
Visiting Professor
Peter joined the Department of Public Health at
Aberdeen University as Professor of Medical Statistics
in 2000. After graduating in statistics at University
College London he worked in various branches of the
Medical Research Council (Statistical Research and
Services Unit, Tuberculosis and Chest Diseases Unit,
Cancer Trials Office and the Clinical Trials Unit) before
coming to Aberdeen.
Peter's PhD in quality of life research (Open University)
was completed whilst on sabbatical at Trondheim
University (NTNU) in Norway, 1997, and he continues to
work part time at NTNU as Professor of medical
statistics. His main research interest remains in the area
of patient reported outcomes and subjective indicators,
particularly in quality of life research, he has written four
books on the subject (see below). Peter was president of
the International Society for Quality of Life Research
(ISOQOL) 2005-2006. He was associate editor of Quality
of Life Research, from 1998, and is currently a member
of the editorial board. Oncology and palliative care have
been two of his particular interests, and he chaired the
Quality of Life Group of the European Organisation for
Research and Treatment of Cancer (EORTC) for the four
years until 2003.
Currently, Peter is working on HRQL assessment in
diverse clinical areas: oncology, palliative care, children
with asthma, Alzheimer’s patients, home parenteral
nutrition, Paget’s disease, and orthopaedics.
Peter's other interests include clinical trials in oncology
and other fields, data monitoring and stopping rules, and
sample size estimation. He was advisor to the World
Health Organisation's Human Reproduction Programme,
and has taught extensively in China and Outer Mongolia.
In 2007 he was appointed Visiting Professor to the
Department of Palliative Care, Policy and Rehabilitation.
62

Dr Wei Gao PhD MMed BMed
Medical Statistician
Wei Gao has a medical background and a PhD in
epidemiology and health statistics. Before joining the
Department as a medical statistician in April 2007, she
worked at Imperial College London in the Infectious
Disease Epidemiology department. She gained considerable
experience in analyzing data from various disease
registries, population-based epidemiology surveys and
gene-environmental interaction studies through her
working with the National University of Singapore from
2002 to 2005. She is a statistical reviewer for the Lancet
and three Lancet series journals. She has expertise in
generating statistical and epidemiologic hypothesis,
describing large observational data and assessing
population disease burdens, survival analysis, advanced
modelling with traditional statistical models and artificial
neural networks, ROC analysis, research design,
computerised record linkage and data management.
Her research interests are extending from previous
statistical epidemiology and experimental medicine to
palliative care and psychosocial medicine. She is
contributing to Strand I of COMPASS (COMPlex
interventions: Assessment, trialS and implementation of
Services) to develop assessment and outcome
measures. She also provides statistical support for the
researchers in the department and teaches MSc
students.
Cassie Goddard BSC MSc
Research Assistant
Cassie studied for her BSc in Applied Psychology at
Liverpool John Moores University, and was awarded an
MSc in Health Promotion and Psychology from the
University of Nottingham in 2006, where her research
interests focused predominantly around smoking
cessation. Following her undergraduate degree, Cassie
worked as Clinical Trials Support Officer on the AspECT
Trail - A Phase III, randomised, study of aspirin and
esomerpazole chemoprevention in Barrett’s Metaplasia.
In May 2007 Cassie joined the Department of Palliative
Care, Policy and Rehabilitation at King’s College London
School of Medicine as a Research Assistant, her main
focus of work concerns the study “Facilitating Implementation
of Gold Standards Framework for Care
Homes”, researching into issues surrounding the
provision of end of life care in care homes. The project is
funded by Guy’s and St Thomas’ Charity.
63

Barbara Gomes BSc MSc
Cicely Saunders International PhD Research
Training Fellow
Barbara completed her first degree in Psychology and
Health at the University of Porto, Portugal and an MSc in
Palliative Care at King's College London. Having gained
experience in research (in topics such as healthcare
staff training, the integration of vocational guidance in
the school curriculum and family influence on life
expectations), she spent one year as a psychologist in a
Portuguese palliative care unit. Together with Professor
Irene Higginson she has been leading a long-term
project supported by Cicely Saunders International
aiming to understand where people die and to discover
ways of empowering patients who wish to die at home.
Barbara’s PhD is looking at ways of improving the quality
of palliative care at home and to discover more costeffective
models of home care. Barbara's interests and
projects include: decision-making at the end of life
regarding place of care and death, quality of care and
patient-centred care, cost-effectiveness, the role of the
media on public education about palliative care,
symptom prevalence in advanced disease, understanding
risk, trends analysis and the evaluation of palliative
care services.
Dr Marjolein Gysels MA PhD
Senior Research Fellow
Marjolein completed an MA at the University of Ghent in
Belgium and received a PhD in anthropology at the
University of Amsterdam in 1996. She has carried out
research in the Democratic Republic of the Congo on
Swahili and oral literature. She worked for the TANESA
project on AIDS in Tanzania on female infertility and for
the MRC (UK) Programme on AIDS in Uganda on
commercial sex work. At King’s College London, she
collaborated on the PROMOTE Project, and she worked
on the Research Evidence Manual which is part of the
NICE Guidance for Supportive and Palliative Care for
those affected by cancer. Since September 2004 she
has been co-managing a programme on breathlessness
in advanced and progressive disease, which is primarily
supported by Cicely Saunders International. She is
currently also involved in the literature scoping on the
delivery and organisation of generalist services for
adults at the end of life for a project funded by NHS
Service Delivery and Organisation (SDO).
64

Dr Sue Hall BSc PhD CPsychol
The Dunhill Lecturer in Palliative Care
Sue studied Psychology at the Polytechnic of East
London and received a PhD in Health Psychology at
King’s College London. Her first academic appointment
was on a study exploring quality of life for patients with
brain tumours. For most of the next 11 years, she
worked with the Psychology & Genetics Research
Group, King’s College London, running national and
international studies focusing on adjustment to serious
negative life events, behaviour change, and facilitating
informed choice. During this time she spent a year at the
Centre for Health Care Research, at the University of
Brighton as Research Fellow and NHS R&D Consultant.
In March 2006, she joined the Department of Palliative
Care, Policy and Rehabilitation as Lecturer in Palliative
Care. She is currently developing a programme of work
to improve palliative care for older people. This includes
producing a new booklet for the World Health Organisation
Solid Facts Series on better palliative care for older
people, understanding the barriers and facilitators of
implementing the Gold Standards Framework for Care
Homes, exploring views of dignity of older people in care
homes, and evaluating dignity therapy for older people
in care homes.
Dr Richard Harding BSc MSc DipSW PhD
Senior Lecturer in Palliative Care
Richard originally read Social Anthropology and
conducted field work in the Netherlands before taking a
Masters and Diploma in Social Work at the London
School of Economics. He undertook his Doctoral studies
in the Department of Palliative Care, Policy & Rehabilitation
at King's College London, developing and testing an
intervention for informal carers. He has worked in
diverse care settings as care provider, care manager,
and social worker and in voluntary sector settings in
group work and training. His interests are primarily
in non-cancer (HIV, heart failure) and in developing an
evidence base for palliative care in Sub-Saharan Africa
where he collaborates in a number of exciting,
productive and enjoyable partnerships with palliative
care and academic settings.
65

Dr Diana Jackson PhD MSc MCSP
Senior Research Fellow
Diana trained as a physiotherapist at King’s College
Hospital and worked in a variety of clinical settings
before specialising in neurological rehabilitation. After
taking an MSc in rehabilitation studies at Southampton
University, she joined the Regional Rehabilitation Unit at
Northwick Park Hospital in 1996. There she has carried
out a series of research studies into aspects of the
rehabilitation and after care of people with complex
problems after acquired brain injury. A particular focus
has been the design and evaluation of pain assessment
tools accessible to patients with communication and
cognitive deficits. This on-going work formed the basis
of her PhD. Another main research interest concerns
carers. In collaboration with researchers from the
Institute of Psychiatry, she has recently completed a
Department of Health funded national study into the
needs and experiences of carers of adults with acquired
brain injury. Findings are being widely disseminated and
will inform service development for carers as part of the
National Service Framework for Long-Term Conditions.
Extension of this work to compare and contrast the
experiences of carers according to their differential
family circumstances, and the condition-specific
problems they have to cope with, in a range of other
long-term neurological conditions is now underway.
Jonathan Koffman BSc MSc
Lecturer in Palliative Care, MSc Course Co-ordinator
Jonathan has a BSc in Social Administration and an
MSc in Sociology with Special Reference to Medicine
from Royal Holloway and Bedford New College.
Jonathan's previous work experience involved health
services research and health services commissioning
for a number of health authorities. He is now Lecturer in
Palliative Care and Course Co-ordinator for the interprofessional
Postgraduate Certificate, Diploma and MSc
in Palliative Care run in collaboration with St. Christopher's
Hospice. His research interests include the endof-life
experiences of black and minority ethnic groups,
social exclusion, and palliative care education. He has
published in the following areas: culture and ethnicity,
older people, needs assessment, social exclusion and
palliative care, palliative care education, HIV and AIDS,
as well as mental health and homelessness. He is
currently completing his PhD that has explored the
experience of living with, and dying from, advanced
cancer among black Caribbean and white patients living
in south east London.
66

Anna Kolliakou BA MSc
Maruzza Foundation Research Assistant
Anna has a BA in Psychology from the University of Essex
and was awarded an MSc in Clinical and Public Health
Aspects of Addiction from the Institute of Psychiatry,
King’s College London. Following her studies she worked
at the Institute of Psychiatry for The Cochrane Collaboration
Depression, Anxiety and Neurosis Group on an
online European mental health library and went on to
become a Research Assistant at the MRC Social Genetic
and Developmental Psychiatry Centre, on a genetic study
investigating issues in unipolar and bipolar depression.
During this time she also held a post at Imperial College
as a fieldwork interviewer on a co-morbidity study on
mental health and substance use. Most of her work has
been completed at the National Addiction Centre
focusing on motivational interviewing in reducing drug
use and drug related harm in young adults. She rejoined
King’s College, after a year-long break, as a Research
Associate for the Department of Palliative Care, Policy
and Rehabilitation on producing a WHO booklet in Better
Practice in Palliative Care for Older People. The project is
funded by the Maruzza Lefebvre D'Ovidio Foundation.
Janet Law OT MSc
Honorary Research Associate
Janet trained in occupational therapy in South Africa. In
addition to her work in South Africa, she has worked in
America, and more recently in London. Through the
years, she developed a clinical interest in neurological
rehabilitation, which led to the completion of her MSc in
Neuro-rehabilitation at Brunel University. Her MSc
dissertation focused on Further Evaluation of the United
Kingdom Functional Assessment Measure and
Functional Independence Measure (UK FIM+FAM)
extended activities of daily living items. Janet now
combines her work as a senior occupational therapist on
the Regional Rehabilitation Unit at Northwick Park
Hospital, with a part-time role in research within the
Department of Palliative Care, Policy and Rehabilitation
at King’s College Hospital. Her interests lie within
evaluation and development of outcome measures for
neurological rehabilitation, of which her current projects
include the Northwick Park Therapy Dependency
Assessment Scale and Rehabilitation Complexity Scale
with the rehabilitation research team.
67

Susan Longhurst BSc
Research Associate
Susan has a BSc in Law and Social Science from Brunel
University. Previously based in the Department of
General Practice at King’s College London, Susan
conducted research investigating the recruitment and
retention of GP registrars and was also involved with the
formation of the GP co-operative, SELDOC. Susan
joined the Department in 2005 to work on a needs
review for a local hospice. She was also involved in the
evaluation of Compass, a pilot telephone helpline,
funded by the King’s Fund, targeting people in South
East London who are living with a life-limiting illness and
their carers. She is currently working on a study to
describe the perceptions of dignity of older people living
in care homes, along with a Cochrane systematic review
focusing specifically on palliative care interventions for
this target population group.
Jennifer Lunan EN AAMS
PA to Professor Irene Higginson and Dr Susan Hall
Jenny qualified as an Enrolled Nurse and went on to
qualify as a Medical Secretary following her nursing
training, gaining an AMPSAR Certificate. Prior to joining
the College Jenny worked as PA/Secretary in the Health
Centre at University College London for three years
before joining the Imperial Cancer Research Fund (now
CRUK), firstly based in the Clinical Oncology Unit at
Guy’s Hospital as PA to a Consultant Histopathologist
and a Biochemist, and then at the ICRF Laboratories at
Lincoln’s Inn Fields as PA/Floor secretary to Senior
Scientists and researchers. She worked as Professor
Irene Higginson’s PA since joining the College in 1999,
firstly based at St Christopher’s Hospice, then moving
into new offices on the second floor of the Weston
Education Centre, then moving into newer offices on the
third floor of the Weston Education Centre. Jenny, along
with previous colleagues, was a founding member of the
Administrative Team and, with the current members of
the Administrative Team, supports the activity of the
department.
68

Dr Wendy Magee PhD NMT ARCM
Honorary Senior Research Fellow
Wendy trained as a music therapist at the University of
Melbourne, Australia, before coming to study and work in
the UK in 1989. She is a specialist in neuropalliative
rehabilitation having worked since 1990 as a clinician,
researcher and manager at the Royal Hospital for Neurodisability
in Putney. Her doctorate was awarded by the
University of Sheffield for researching the experience of
music therapy for people living with chronic and complex
Multiple Sclerosis. She has completed research projects
using both quantitative and qualitative methodologies
examining the effects of music therapy in collaborative
practice to address communication and well-being after
stroke, and exploring of the use of electronic music
technologies in music therapy practice. She currently
holds a postdoctoral fellowship at the Institute of Neuropalliative
Rehabilitation, Putney, London. She has
published widely on Multiple Sclerosis, low awareness
states, Huntington’s Disease and neuro-rehabilitation.
Current research activity focuses on music therapy in the
treatment of neurological disorders and the development
and validation of evaluation tools with this population.
Dr Farida Malik BSc(Hons), MBBS, MRCP, MSc
Cicely Saunders International Research Training Fellow
Farida studied medicine at UMDS, University of London,
qualifying in 1996. Following this she trained in hospital
general medicine before joining the South Thames
Specialist Registrar Training Scheme in Palliative
Medicine. She has previously undertaken an intercalated
BSc in Psychology (University of London) and an MSc in
Palliative Care at King’s College London. Farida joined
the department in 2005. She is currently undertaking a
PhD funded by the Cicely Saunders International
Programme for Research into Breathlessness looking at
the experience of caregivers of breathless patients with
advanced disease. Farida’s research interests include
breathlessness and sleep disturbance, steroids in brain
tumours, symptom and quality of life assessment.
69

Professor Kathryn McPherson PhD
Visiting Professor
Kathryn has a clinical background in nursing training in
Australia before moving to the United Kingdom to study
midwifery and then Health Visiting, both in Edinburgh.
Whilst working as a health visitor, Kath undertook a
psychology degree then took up a research position at
the Astley Ainslie Hospital in Edinburgh and then went
on to complete her PhD exploring the effects of brain
injury on the individual and their family in the transition
from inpatient rehabilitation to home. Prior to her current
appointment, she held academic posts at the University
of Edinburgh, the University of Otago (New Zealand) and
the University of Southampton. She continues to cosupervise
PhD students at both the University of Otago
and the University of Southampton. Kath’s research
focus is on: investigating outcomes in ways that matter
most to people with chronic conditions (both conceptual
and psychometric issues); improving effectiveness of
rehabilitation processes such as goals and goal setting
and teamwork; clinical decision making in rehabilitation;
and rehabilitation workforce development. She has been
an Associate Editor with the BMJ group journal Quality
and Safety in Healthcare since 2001. She is also on the
editorial board of Disability and Rehabilitation, Clinical
Rehabilitation and the International Journal of Nursing
Studies. In her role as Visiting Professor at the
Department of Palliative Care, Policy & Rehabilitation
Palliative Care and Rehabilitation, Kath works with
Professor Lynne Turner-Stokes and others in continuing
work addressing the identified lack of knowledge about
the impact of chronic neurological conditions and the
development of more robust and relevant evidence base
in rehabilitation.
Dr Fliss Murtagh MBBS MRCGP MSc
Clinical Research Training Fellow
Fliss is a graduate of the Royal Free Hospital Medical
School, London. She worked as a general practitioner
with a special interest in palliative care for 10 years
before specialising in palliative care from 2000. She
completed the MSc in Palliative Care within the
department in 2003, and has published work from her
MSc dissertation on facilitating patient preferences in
decision-making in the Journal of Medical Ethics. She
has now completed consultant training in palliative
medicine, and is currently undertaking a PhD
researching the palliative care needs of patients with
advanced chronic kidney disease who are managed
conservatively, without dialysis. Together with
Professors Irene Higginson and Julia Addington-Hall,
she has completed a systematic review of symptoms in
end stage renal disease, as well as a review of the use of
opioids in conservatively-managed end stage renal
disease. She is also part of the working group
developing a renal version of the Liverpool Care Pathway
for national implementation in the UK. Other interests
include ethics, palliative care for other non-cancer
conditions, and teaching palliative care.
70

Dr Suzanne Penfold BSc PhD
Research Fellow
Suzanne originally studied pharmacology at
Southampton University but later changed to a career in
public health research. Her appointments thus far have
taken her to Bristol, Edinburgh and Aberdeen Universities.
During these appointments Suzanne gained
experience of conducting research evaluations in several
aspects of reproductive health, including Scottish male
reproductive health, Scottish teenage sexual health (PhD
research project) and maternal health in developing
countries. In this department she is working with
Richard Harding to undertake an evaluation of PEPFARfunded
services in Kenya and Uganda offering palliative
care for people living with HIV/AIDS. This longitudinal
study explores links between components of care and
health outcomes. Suzanne’s research interests include
reproductive health research, evaluating complex
interventions, health research in developing countries
and infectious disease epidemiology.
Dr Wendy Prentice MBBS, MA, FRCP
Consultant in Palliative Medicine
Wendy qualified in 1992 and has a background in
general medicine and a broad experience of palliative
medicine in a variety of settings. She commenced her
first consultant / honorary clinical senior lecturer post in
the North East in 2002. Within this post she led a multiprofessional
palliative care team working in primary and
secondary care and also developed the undergraduate
palliative medicine curriculum for Newcastle University.
Wendy joined the palliative care team at Kings College
Hospital towards the end of 2006.
Throughout her career Wendy has been interested in the
better integration of specialist palliative care services
within non-specialist settings. She is also interested in
the development and delivery of education, as well as
the various factors influencing end of life decision
making. In 2002 she completed an MA in the Ethics of
Cancer and Palliative Care, her dissertation within this
focused on the issues of justice and resource allocation.
Diana Opio
Research Associate
Dr Wendy Prentice
After training as a nurse Diana completed a degree in
Humanities then joined St Christopher’s Hospice where
she worked as a palliative care nurse for 3 years. She
also undertook a post graduate certificate in education
and completed the diploma in palliative care awarded by
King’s College, London, before proceeding to Leuven in
Belgium where she gained a master’s in applied ethics.
Diana and her family then moved to Uganda where she
was appointed as a lecturer at Uganda Martyrs
University, following which she worked for 3 years as
consultant education advisor at Hospice Africa Uganda
in Kampala developing clinical and distance learning
courses in palliative care. She then moved to The
Mildmay Centre also in Kampala, where she worked for
a further 3 years running the BSc programme ‘A health
systems approach to HIV/AIDS’ with students from
Uganda, Kenya and Tanzania validated by The University
of Manchester. In Uganda her special area of interest
was developing effective palliative home based care
services. During her time in Uganda she also gained a
diploma in health services management run as a
distance learning programme with the RCN.
On returning to the UK, Diana joined in the Department
of Palliative Care, Policy and Rehabilitation in September
2007, and is currently working on a research project
looking at the palliative care needs of the elderly.
71

Tariq Saleem BSc MSc
Research Fellow
Tariq has a degree in Psychology from the University of
London and an MSc in Health Psychology. Currently he
has a leading role as Research Fellow and centre
coordinator for the King’s Centre in Palliative Care in
Neurology. The centre’s mission is to improve the
treatment, rehabilitation and care of people affected by
long term and progressive neurological conditions
through research and development. He has published in
the following areas: stroke, multiple sclerosis,
Parkinson’s disease, progressive neurological
conditions, cancer screening, sickle cell & thalassaemia,
health psychology, anxiety and worrying, culture and
ethnicity, bilingual health advocacy and palliative care.
He is currently conducting a three year longitudinal
study funded by the Department of Health looking at the
symptoms and care needs in advanced Parkinson’s
disease, multiple symptoms atrophy and progressive
supranuclear palsy.
Lucy Selman BA MPhil Cert Pall Care
Research Associate
Lucy read Philosophy at Nottingham University, and
received an MPhil in Philosophy from Birkbeck College,
specialising in Philosophy of Science. In 2006 she
completed the Certificate in Palliative Care at King’s.
After working for Help the Hospices, she travelled in
India, undertaking fieldwork for the International
Observatory on End of Life Care at Lancaster University.
In June 2005 she joined the department to work on a
project modelling a palliative care service for heart
failure patients at St Thomas’ NHS Foundation Trust.
She is currently working for Cicely Saunders International
on the ENCOMPASS project, validating a version
of the Palliative Care Outcome Scale for use in the
African context. ENCOMPASS is a collaboration
between King’s and palliative care centres in South
Africa and Uganda, with preliminary development and
validation of the POS through the African Palliative Care
Association. Her academic interests include qualitative
research, palliative care in the developing world,
psycho-spiritual interventions and complementary
therapies. A qualified yoga teacher and Thai massage
practitioner, in 2006 Lucy was awarded a Churchill
Travelling Fellowship to conduct research in India into
the use of yoga and meditation in end of life care.
72

Cathy Shipman BA MSc
Senior Research Fellow
Cathy’s background is in medical sociology and her
previous work has included research on out of hours
care, transition to community settings for people with
learning disabilities, health needs assessment, mental
health promotion, local history and the impact of
unemployment on the work of health and social service
professionals. Currently, her main area of interest is
palliative care in primary care. She is working on a
scoping exercise on generalist end of life care commissioned
by the SDO and is supporting the evaluation of a
palliative care helpline for NHS Direct and the evaluation
of the Policy Unit for the National Council of Palliative
Care. She has conducted a needs review for a hospice
and a pilot study developing methods for a longitudinal
study of cancer patients over time. She has worked on
the national evaluation of the Department of Health
funded palliative care education and support
programmes for district and community nurses, and on
work with PCTs concerning palliative care service
development and commissioning. Cathy also works in
the Department of General Practice & Primary Care at
KCL, on a study investigating the palliative care needs of
COPD patients.
Victoria Simms BSc MSc
Research Associate
Vicky has a BSc in Natural Sciences from Durham
University and an MSc in Public Health in Developing
Countries from the London School of Hygiene and
Tropical Medicine. She has previously worked on trials
of environmental and sanitary improvements to reduce
trachoma in The Gambia, community-based surveys in
Sudan, and a national survey of physical disability in
Rwanda, which included a case-control study of the
relationship between disability and poverty. She is now
working with Dr Richard Harding on an evaluation of
palliative care provision for people with HIV in Kenya and
Uganda, funded by PEPFAR. Vicky’s research interests
include sanitation, communicable disease epidemiology,
statistics and study design, and healthcare provision in
Africa.
73

Reverend Peter Speck BSc MA
Researcher & Former Health Care Chaplain, Honorary
Senior Lecturer
Peter graduated with a first degree in Biochemistry and
zoology before studying for an MA in Theology. His
thesis focused on the Theological Aspects of Visiting in
Times of Illness. Following a position in a Parish Ministry
in North Wales and then hospital chaplain in Sheffield,
Peter became Chaplain and Honorary Senior Lecturer
(medical ethics) at the Royal Free Hospital in London. He
was Trust Chaplaincy Team Leader for Southampton
University NHS Trust until 2002. Currently Visiting Fellow
(Faculty of Medicine) at Southampton University and
Honorary Senior Lecturer, King’s College London
(Palliative Care, Policy & Rehabilitation), Peter is author
of several books on pastoral care, chapters on aspects
of palliative care, and spiritual care and bereavement.
He was a member of the Editorial Board of Palliative
Medicine and served on the Editorial Board of NICE
producing “Supportive Care in Palliative Care”
Guidance. He is a Fellow and Member of the Council of
Palliative Care section of the Royal Society of Medicine.
His research interests include belief systems and
whether they influence outcomes in illness or ageing,
with several peer reviewed papers published.
Frances Stewart BSc
Research Assistant
Frances graduated from Sheffield University in
2004 with a 2:1 in Psychology. She then worked as a
Research Assistant for the University of Sheffield where
her main role was developing a disease-specific 'Quality
of Life' questionnaire for use in young adults with
Growth Hormone Deficiency. Her other research areas
have included studying the impact of Cancer on
childhood and adolescence Quality of Life.
Following the completion of this study Frances joined
King’s College London as a research assistant in 2007.
Currently her main area of research is a study to evaluate
the success and barriers to the implementation of a Gold
Standard Framework in care homes to improve palliative
and end-of-life care.
Laura Skingle
Research Assistant
Laura studied for her BSc in Psychology & Human
Biology at University College Northampton and was later
awarded an MSc in Health Psychology from the University
of Bath in 2005. Whilst there Laura undertook a
placement at the Royal Marsden Hospital in Sutton to
study the impact of maternal breast cancer on children’s
social and adaptive functioning. The research was
undertaken in the context of an international multicentre
research project entitled “Children of Somatically Ill
Parents (COSIP)”.
Laura joined the Department of Palliative Care, Policy &
Rehabilitation at King’s College London School of
Medicine as a Research Assistant in July 2007. Her main
focus of research is “Improving End of Life Care for the
Elderly at the Hospital Community Interface: An A&E
Audit”. This research will involve understanding the
patterns of emergency department admission for the
elderly with palliative care needs including if admissions
to emergency departments are preventable for this
population. The project is funded by Guy’s & St Thomas’
Charity & King's College Hospital Charity.
Frances Stewart
74

Professor Derick Wade MA MB BChi, MD FRCP
Honorary part-time Chair of Rehabilitation
In addition to his general medical training, Derick trained
in several specialities related to his current posts
including neurology, neurosurgery, psychiatry and
neurophysiology. He has expertise in many clinical
areas, including: stroke, head injury rehabilitation,
management of multiple sclerosis and motor neurone
disease, assessment of patients in the Permanent
Vegetative State, and the management of patients who
have disability without any underlying disease. His
research activities cover a wide area and he has
published over 180 papers in peer reviewed journals on
many different studies. He is starting studies on mental
practice as a rehabilitation technique. He writes books
and book chapters on many aspects of disabling
neurological disease and has edited Clinical Rehabilitation,
since 1994. He is involved in training doctors and
other professions who are specialising in rehabilitation
and supervises and examines higher degrees.
Heather Williams MSc RN ONC
Dunhill Research Training Fellow
Heather is a qualified Orthopaedic nurse. She worked
for many years as an orthopaedic ward sister at
Northwick Park Hospital before moving into Clinical
Audit. Heather completed further education in
“Evaluation of Clinical Practice”, which helped to
develop her research interests. She joined the Regional
Rehabilitation Unit at Northwick Park in February 2002,
and is currently conducting a research project to further
develop the Northwick Park Dependency Score to
calculate in-patient nursing staff provision within a
rehabilitation setting.
Derick is closely involved in health service management
and development. He has been an advisor to
Oxfordshire Health Authority and been involved in local
working parties on many aspects of neurological
rehabilitation. He has been involved in many national
groups and committees. He has also been involved in
WHO groups and advised national groups in the USA
and New Zealand. In 2001, he was appointed Visiting
Professor in Community Rehabilitation at the University
of Maastricht, the Netherlands. In June 2002, he was
made an honorary fellow of the College of Occupational
Therapists; and in October 2005, he became a part-time
professor in neurological rehabilitation at King’s College
Hospital London.
75

Previous Members of the Department (since 2004)
NAME POSITION YEAR OF
DEPARTURE
Professor Julia Addington-Hall Professor of Palliative Care Research 2004
and Policy/Deputy Head of Department
Bimpe Akinwunmi PA to Professor Addington-Hall 2004
Dr Lara Alloway Specialist Registrar 2004
Jo Armes CRUK Research Fellow 2004
Jenni Burt Research Associate 2004
Floss Chittenden Data Entry Clerk 2004
Dr Elizabeth Davies Clinical Senior Research Fellow 2004
Darryl De Prez Head of Fundraising, Cicely Saunders International 2007
Sam Hart Research Associate 2006
Dr Rhidian Hughes Senior Research Fellow 2004
Maggie Johnson Departmental Administrator 2005
Julie Payne Student 2004
Sally Plumb Honorary Research Associate 2005
Dr Jean Potter Mrs Coco Marcus Clinical PhD Research 2004
Training Fellow
Carolin Seitz Project Support Officer 2006
Joel Sheridan Research Assistant Psychologist 2004
Amanda Tadrous Research Assistant Psychologist 2004
Bella Vivat Research Fellow 2004
76