the true colours symptom management team final report · response to requests for help received by...
TRANSCRIPT
1
The True Colours Symptom Management Team
Final Report
To: The True Colours Trust Board of Trustees
Date: September 2012
Author: Linda Maynard, Lead Nurse, EACH
1 Executive Summary
1.1 This project implemented and evaluated a new specialist nursing service
providing 24/7 symptom management for children with life-threatening and
life-limiting conditions and their families.
1.2 Service objectives were to provide symptom management support; open
access to families and professionals; choice of place of care and death; and to
collaborate with others to develop common approaches, shared pathways
and management plans.
1.3 Delivery was by five clinical nurse specialists across Cambridgeshire, North
and West Essex, Norfolk and Suffolk.
1.4 Review of the literature demonstrated that evidence of need is well
established across the age range yet evidence for the effectiveness of
specialist interventions in adults is sparse and non-existent in the younger
discipline of Children’s Palliative Care (CPC). To date novel service
approaches continue to be implemented based on clinical practice and expert
2
opinion and the CPC arena is challenged to make better use of transferable
evidence from other sectors.
1.5 Mixed methodology, using audit and evaluation strategies, applied Donabedian
principles for assessing the quality of care provided and received. Context,
processes and outcomes of care were evaluated by examining nursing
process and activity data, questionnaire feedback from three participant
groups: 1) hospice professionals, 2) external professionals and 3) families; and
through reflective feedback from the perspective of the nursing team itself.
1.6 During the course of the project, 358 children and their families required
direct specialist symptom management support, fifty one of whom received a
substantial level of care and support at end of life. In addition, 250 hospice
and external professionals had direct contact with team members to liaise,
collaborate and share knowledge and skills.
1.7 Findings demonstrated that the team “filled a critical gap” in providing care and
support to children and families anytime of the day or night and that it met its
pre-set service standards. Median 21 (range 0-48) hours of paid nursing work
(including travel) outside contracted hours was undertaken per month in
response to requests for help received by the nursing team when “on call”
outside of office hours.
1.8 Anticipatory symptom management and care planning during Monday to
Friday 9am to 5pm ensured that episodes of urgent help for families outside
these times was kept to a manageable and sustainable level. 127 calls after
6pm and before 8am or on Saturdays or Sundays were received on 97 days
throughout the 18 month project period (18% of available days).
1.9 Families valued the role which, they reported, enabled choice in location of
care and perceived the team as a “lifeline”. The middle phase of children’s
illnesses was less well supported.
3
1.10 Professionals described the benefits to children of organisational boundary
spanning by the team although role clarity and enhancing communications
were areas for improvement identified by a minority of questionnaire
respondents.
1.11 The team itself consistently rated the ability to offer choice of place of care
and death as the principal success factor of the new service and that being
available 24/7 had provided families with “peace of mind”.
1.12 The development of a nursing Logic Model for a network approach to 24/7
care has demonstrated relationships between investments into the service
and results of the evaluation. Critical success factors were having the right
level of specialist and advanced nursing skills; formalised and funded on-call
arrangements; anticipatory care planning; presence of written symptom
management plans, access to good quality clinical supervision and making best
use of evidence based practice derived from other disciplines and sectors.
1.13 Recommendations included: establishment of formal network structures
unconstrained by organisational or professional boundaries; development of a
multi-agency workforce strategy and the need to develop capacity in the
children’s palliative care sector to undertake academic research measuring
impact of interventions.
1.14 This evaluation has revealed the successful implementation of a hands on,
specialist, nurse-led service for children with palliative care needs and their
families by a team of clinical nurse specialists who: “have been the glue between
the professionals, making it easier to talk about really difficult things”.
1.15 EACH is grateful to the True Colours Trust for funding this service
innovation and for the encouragement and support provided by the Trust
Executive Team along the journey. Going forward this service will continue
to be provided, funded by EACH, and will be known as the EACH True
Colours Symptom Management Team.
4
2 Background
The current socio-political agenda and financial climate in England are urgent drivers
for change in the management and delivery of all health and social care services
(Department of Health (DH), 2011a). There is a need to find different ways of
providing care closer to home, reducing costs and standardising care pathways to
reduce variation while responding to choice and improving the clinical outcomes
which matter to children and families (DH, 2010a). Measuring effectiveness, safety
and patient experience is fundamental to evaluating health care. These overarching
goals form the basis of the current National Health Service (NHS) Outcomes
Framework designed to measure the overall performance of the NHS (DH, 2011b).
Palliative care for children is the active total approach to care of a child’s mind, body
and spirit and has emerged as a sub-speciality in the 21st Century supported by an
increasing number of professionals worldwide (Hain et al, 2012).
The purpose of this study was to evaluate the effectiveness of a novel approach to
delivering 24/7 care and support in children’s palliative care (CPC) across
Cambridgeshire, North and West Essex, Norfolk and Suffolk. The vision for this new
service was to ensure that all children with life-threatening (LTC), life-limiting
conditions (LLC) and complex health care needs and their families, living in this area,
had access to high quality symptom management across the whole 24 hour period.
The overall aim was to provide families with choices about their child’s care and to
work in partnership with them and other organisations to develop individualised
symptom management plans (SMPs).
The nursing team was recruited during 2010 to fill an identified gap (Vickers, 2008)
and lead the development of a symptom management service by providing care and
support at any time of the day and night and in the location of choice for child and
family. This report discusses evaluation of the context and processes of care, to
determine whether service standards and protocols established at inception were
met, identifies good practice and areas for improvement and classifies the
components of a model of service which contribute to the small but growing body of
evidence in children’s palliative care (CPC).
5
Evidence of need is well established across the age range yet evidence for the
effectiveness of specialist interventions in adults is sparse and non-existent in the
younger discipline of CPC. Methodological shortcomings inhibiting the use of formal
meta-analysis methods have been reported in the adult literature; such as the
heterogeneity of studies, interventions and outcomes (Zimmerman et al, 2008).
Research with children is not only hampered by these method issues but is further
complicated by the heterogeneity of children’s conditions, wide variation in illness
trajectories, age and stage of development of child participants and the fact that care
for children is inextricably linked within a family systemic approach (Association for
Children’s Palliative Care (ACT), 2009a; Wolfe and Siden, 2012). This is further
compounded by ethical tensions in conducting research with vulnerable groups
which have suggested that children with LTCs and LLCs and their families are
negatively affected by participation in research (Hynson et al, 2006). Although there
is little evidence to support this assertion this has created barriers to researchers
obtaining ethical approval which has influenced the volume, areas and types of
research undertaken over the past 20 years.
Local standards for this new service were established through critique of a
combination of national policy guidance, expert opinion, best practice standards and
descriptive studies of CPC. A critique of this and research evidence from adult
palliative care and Community Children’s Nursing (CCN) literature has been
undertaken and is available on request. This literature review illustrated the
challenges faced by the CPC discipline in relation to developing evidence-based
services and the need for enhancing research capability and capacity in the sector. To
date novel service approaches continue to be implemented based on clinical practice
and expert opinion and the CPC arena is challenged to make better use of
transferable evidence from other sectors.
To achieve an holistic evaluation of this service it was necessary to review the
context of care on macro, mezzo and micro levels, articulate demographics and
processes of caring interventions and seek feedback from key groups of stakeholders
including the nursing team themselves. A combination of audit and evaluation
approaches was relevant to satisfy the evaluation objectives and qualitative and
6
quantitative data were collected which are presented below using the concepts of
structure, process and outcome.
An illustrative summary of the evaluation design is provided in Figure 1 which
outlines how the two parts of the evaluation, data collection methods, analysis and
synthesis of findings culminated in a nursing Logic Model which contributes to the
body of evidence of ‘what works’ for children with CPC needs.
Figure 1 Overview of the evaluation design
Evaluation of an innovative service approach to the provision of 24/7 care and support in
children’s palliative care
Have service standards and objectives been met?
Objective 1 Objectives 2, 3 and 4 Objective 5
Daily
nursing
activity
Stakeholder
questionnaire
ACT Parent Service
Assessment Tool
External
professionalsFamily
Hospice
professionals
Quantitative data
analysis
Qualitative data
analysisCompilation and quantitative data analysis
Outputs
Synthesis of findings and Logic Model development
Nursing Logic Model for a network approach to
24/7 children’s palliative care
Inputs Outcomes
Evaluation Part 2: Outcome Evaluation Part 1: Structure and Process
Context of
careProcess of care
Caseload
demography TCT
Team
7
3 Literature Review
The complete literature review is available on request. It supports the evaluation of
this novel service development revealing how an awareness of services available for
adults, particularly in relation to end of life care (EoLC) (Liben et al, 2008) can
influence developments across the children’s sector (Hain et al, 2012). Robust
research evidence on ‘what works’ for children with palliative care needs and their
families in the community is almost non-existent. There is, however, a growing body
of evaluative research in the adult specialist palliative care sector and other models
of children’s nursing (e.g. cancer, community), elements of which contain learning
opportunities transferable to the highly specialised field of CPC.
Table 1 Exclusion and inclusion criteria for electronic literature
Exclusion Criteria Inclusion Criteria
Literature:
Which measures quality of life in
children
Which focuses on bereavement of
family members
Where bereavement services are not part of the palliative care pathway
Which focuses on methodological
issues e.g. investigating non response
bias in CPC research
Which centres exclusively on specialist palliative care from the
tertiary service perspective
Which focuses on 24/7 telephone
support for professionals
Which evaluates children’s hospice services but do not discuss out of
hours (OOH) provision for children
and families at home
Research, descriptive studies, policy, best
practice guidelines, expert opinion
concerning:
Adult cancer and palliative care
Adult ‘out of hours’ cancer and
palliative care
Children’s palliative care (CPC)
24/7 services in CPC
Symptom management in CPC
Children’s community nursing and
24/7 services
Children’s services networks
Specialist and advanced nursing
practice and nurse consultant roles
Using the principles of a systematic review records were sought electronically and by
hand which met the inclusion criteria above. Figure 2 shows the search and selection
process undertaken to search, sort and categorise electronic and paper records.
8
Figure 2 Search and selection process
Records identified through
database searching after limits
applied
(n=4162)
Additional records identified
through other sources
(n=43)
Unable to remove duplicates as
duplicate limit with NHS Evidence Healthcare database
advanced search has duplicate limit of 500
Records screened for potential
relevance (n=4162)
Full text articles assessed for
eligibility (n=323)
Full text articles excluded
which did not meet inclusion
criteria (Table 1)
(n=173)
Research studies, descriptive studies,
service evaluations, opinion papers,
policy guidance, national best practice
standards included (n=150)
Adult
palliative
care (n=24)
Children’s
palliative
care (n=52)
Community
children’s
nursing and
networks
(n=19)
Nursing roles
(n=12)
Out of hours
adult (n=16)
children
(n=2)
Symptoms
(n=25)
Research studies which
include discussion regarding
24/7 out of hours support
(n=39)
Full text pieces meeting the eligibility criteria were sorted by broad theme and
categorised into three sub themes: a) research, b) descriptive, and c) policy, practice,
expert opinion. This demonstrated the paucity of directly relevant research and the
need for this review to combine relevant and partially relevant research with the
wealth of other available literature.
9
Much of the literature related to the delivery of 24/7 and “out of hours” (OOH)
palliative care services is derived from the adult sector. However, learning about
service delivery from the adult sector is broadly transferrable to children’s service
provision in contrast to the clear differences at the individual, biomedical level which
are less easily reassigned. A striking feature of this literature review is the absence of
evidence about the expansion of CPC services in larger geographical ‘patches’ and
across organisational boundaries, the role of hospice services in leading these
developments and the emerging role of the Clinical Nurse Specialist (CNS) in CPC.
10
4 Methods
A mixed methods approach was taken to investigate the structure, process and
outcome of the service from the perspective of nurse team members, family users of
the service and professionals within the network.
4.1 Aim of the service evaluation
The aim of the evaluation was to determine whether the implementation of the 24/7
Symptom Management Team Service Project had met its objectives and whether
service standards, set at inception, had been achieved.
Service Objectives:
Provide 24/7 access to high quality symptom management for all who need it
Provide children and families with choices about location of care
Contribute to the development of a medical support network
Work in partnership with statutory services
Act as a catalyst for service improvement, learning and development
Find out ‘what works’ for children, families and professionals.
Service standards:
24/7 specialist symptom management advice and support
Response to all telephone or e-mail enquiries within four hours
Assessment of the child or young person’s symptoms and development of an
individual management plan
Assessment of the child or young person wherever needed, at home,
nursery, school, college, hospice or hospital
Being a link between home/hospice/hospital, the child or young person and
family and other professionals, and directing children or young people and
families to other services as needed
Representing the family and the child or young person when needed.
11
4.2 Objectives of the service evaluation
The specific objectives for the evaluation were:
1) Audit the standard of Children’s Palliative Care in the network
2) Audit the new 24/7 symptom management team service standards
3) Identify areas of good practice
4) Outline problems or gaps where improvements might help children and
families in the future
5) Articulate the components of a service model which provides care and
support across the whole 24 hour period.
An evaluation method was designed to meet all objectives and which would enable
data, derived from different sources and levels, to be triangulated. A between-
method triangulation approach was designed to maximise the development of
nursing knowledge and to corroborate and blend the daily diary data collected by the
nurses about their activity with the survey data from families and professionals. This
aimed to achieve convergent validity of the overall effectiveness of the True Colours
Team (Burns and Grove 1997, Polit and Beck 2012) and attain better understanding
of the initial impact of this network approach to the delivery of a community based
24/7 symptom management service.
4.3 The stages of the evaluation
The evaluation consisted of two parts to meet the objectives (Figure 1).
Part 1: The Context and process of care
Part 2: Outcome of service delivery and care.
4.3.1 Evaluation Part 1: The Context and process of care
4.3.1.1 Context of care data collection
Population estimates were obtained from the Office of National Statistics (ONS)
(2011) and prevalence for CPC calculated (Fraser et al, 2011) for the EACH
network. Services which provided, or had the potential to deliver palliative care to
12
children were mapped. Recruitment, employment and nursing experience data were
maintained to describe the composition of the team. Three levels of information
were combined to provide a comprehensive picture of structure and context.
4.3.1.2 Process data collection
Process data were collected on a continuous basis and collated into Excel
worksheets so that this information could be combined with the structural mapping
and nursing activity data for synthesis with Part 2 findings. Data gathered were:
Demographics of referrals, discharges, deaths and the ongoing caseload
Frequency of out of hours calls
Frequency of clinical work out of hours
Frequency of episode and time of direct clinical intervention
Frequency of location of clinical interventions
Total travel time and mileage
Frequency of activity building relationships (e.g. oncology clinic work).
4.3.1.3 Development of clinical activity data collection tool
A nursing activity data sheet was developed by the nursing team at the start of the
service to contribute to objective 2. The purpose was to enable individual recording
of their activities with the child and family caseload and describe, on a daily basis,
their experiences regarding their role.
A checklist of nursing interventions was developed and grouped thematically:
Care planning and review
Symptom Management
Joint working and care co-ordination
Medicines management
Liaison with professionals
Psycho-social interventions with child and family
Post death care
13
Nurses also recorded their perception of the nursing roles as they undertook the
above interventions using the common nursing descriptors:
Practitioner
Patient Advocate
Clinical Leader
Collaborator
Educator
Researcher
Manager
This was felt to be practical with such a small group of committed nurses and was
advocated to provide as continuous and contemporaneous record of activity as
possible to avoid difficulties with accurate recall or forgetfulness.
Figure 3: Diary development and data management process
Daily recording of
activity by Clinical
Nurse Specialist
1st October 2010 to
31st March 2012
Electronic
completion by
individual Clinical
Nurse Specialist
Sent to Team
Administrator
monthly
Collation of
individual sheets for
each month by
Team Administrator
Generation of
anonymised Team
datasets by month
Data sets for twelve
months April 2011 –
March 2012
analysed using
Excel
Team approach to
generation of diary
– data collection
sheet
Clarification of
coding following
observation of
variance by Team
Administrator
Weekly discussion
on definitions and
consistency of
coding
Figure 3 demonstrates the process of diary development and data management for
nursing activity related to direct activity associated with a child or family member on
the Team’s caseload.
14
4.3.2 Part 2: Outcome of service delivery and care
4.3.2.1 Formative evaluation
Formative evaluation was undertaken in April 2011 to identify any problems with
service delivery early in the project. It also tested the acceptability of the survey
instrument and checked for content relevancy, question reliability, the order and
combination of open and closed questions, overall design and the postal
administration method to ensure as rigorous scientific methodology as possible and
maximise data quality.
This pilot evaluation provided information with which to amend the questionnaire by
including ‘don’t know’ as an additional possible response to address the issue of
missing or spoiled data. The Report of the formative evaluation was presented to the
True Colours Board in September 2011.
4.3.2.2 Summative evaluation
Audit methodology was used to assess the service against the 10 standards of service
delivery which were set at the outset of the project (Objective 2). Seven items were
devised to assess usefulness of and satisfaction with elements of the service
specification and one question was included to illicit the respondents’ view on
satisfaction of the service overall. The response format used a four point Likert style
scale and asked the participant to indicate the extent to which they agreed or
disagreed with statements constructed around the standards, practical elements and
team qualities of the service. Two open ended questions were designed to identify
areas of good practice which were perceived as helpful to stakeholders (Objective 3)
and identify problems or gaps in service delivery specification to aid future
improvement (Objective 4).
Surveys for the different stakeholder groups: families, all hospice professionals and
external professionals (nursing and medical) were identical except for the use of
personal pronouns for families which were exchanged for ‘the child and family’ in
professionals’ surveys. Hospice and external professionals’ surveys also had a
15
distinguishing foot note so that responses from each group could be compared
(Appendix 1).
The aim was to achieve the acceptable minimum rate of response of 75% in order to
generalise the findings with confidence (Cook et al, 2009) although Polit and Beck
(2012) suggested that mailed questionnaires typically achieve response rates of less
than 50%.
4.3.2.3 The ACT Parent Service Assessment Tool
A standard questionnaire generated by ACT (Appendix 2) to assess parents
perception of the standards of palliative care in their home location against best
practice goals and standards (ACT, 2004; ACT, 2007) was included in the
questionnaire bundle for families.
Respondents were asked to indicate ‘yes’; ‘no’; ‘not applicable’; or ‘don’t know’ to 64
items relating to the six key pathway standards:
Breaking the news
Planning for going home
Multi-agency assessment
Multi-agency care plan
End of life plan
Bereavement.
4.3.2.4 Sample selection families
All families who used the True Colours Symptom Management Team Service across
the EACH catchment area in Cambridgeshire, North and West Essex, Norfolk and
Suffolk since October 2010 were eligible to participate in the Evaluation. The
sampling frame of family participants for the summative evaluation was constructed
from all current or past users of the service between April 2011 and January 2012.
Bereavement was not an exclusion criterion but consideration was given as to the
timing of the initial approach.
16
The initial approach to participate in the service evaluation was by a CNS who had
worked with, or knew the family. All CNSs have highly developed communication
skills and were therefore able to react to any individual responses with empathy and
in a supportive manner. This personal approach, using a standard ‘script’ (Appendix
3), enabled the importance of the evaluation to be conveyed without unduly
influencing the potential respondent.
Potential participants were offered the following choices: complete the questionnaire
and return it in a reply paid envelope; complete the questionnaires via the telephone
or in a face to face interview with the independent Care Development Manager; or
decline to take part. Participants were informed that they could withdraw from the
evaluation process at any time and that should they decline to take part their current
care or care in the future, from EACH or the True Colours Team, would not be
affected in any way. There was nothing on the questionnaire bundle to identify
individual families so their participation was entirely anonymous.
Reminder questionnaires were sent to all families in the sampling frame four weeks
after the initial mailing and were printed on different coloured paper to distinguish
them from the initial posting.
4.3.2.5 Consent to participate
Potential participants who chose to seek help with the completion of the
questionnaires were advised to contact the Care Development Manager directly
using the contact details on the information sheet. She sought verbal consent when
assisting completion via the telephone and written consent when undertaking a face
to face interview (Appendix 4). Consent was implied if completed questionnaires
were returned. The Care Development Manager was entirely independent of clinical
service delivery. She reassured families that their participation, or not, would not be
made known to the Team.
4.3.2.6 Sample selection professionals
All professional stakeholders working in organisations situated within the EACH
catchment area who had experienced contact with the Team between April 2011
17
and January 2012 were the professional sampling frame and were invited to take
part. Returning the questionnaire implied consent to participate for both sets.
Respondents were asked to identify their professional group (Medical, Nursing,
Allied Health Professional, Other) to facilitate comparison. There was nothing on the
questionnaire bundle to identify individual professionals so their participation was
entirely anonymous. Reminder questionnaires were sent four weeks after the initial
mailing.
4.3.2.7 Ethical considerations
Written ethical approval for the evaluation was obtained from the Ethics Committee
of the Faculty of Health and Social Care, London South Bank University.
A high standard of ethical principle was promoted throughout all stages of the
evaluation in accordance with set standards for research governance in health and
social care.
4.3.2.8 Team evaluation
A facilitated evaluation day was carried out following the end of the project period in
June 2012. This gave the True Colours Team the opportunity for critical reflection
and review of the service and the chance to discuss areas for improvement and
future development. Each member of the Team completed a modified version of the
stakeholder questionnaire and exercises were undertaken to evaluate the team’s
perception of how effective it had been in meeting each of the objectives of the
service and to evaluate the measures of success identified in the initial project
proposal which were:
Choice of Place of Care and Death for Children, Young People and their
families
Effective Symptom Control
Better skilled and knowledgeable staff within universal and core/targeted
services.
18
4.3.2.9 Health economics
In order to indicate the economic impact of the 24/7 service data were collected
from the Norfolk and Norwich University Hospitals NHS Trust reporting on the
frequency of both inpatient and outpatient attendance of the children and young
people on the EACH Quidenham caseload. Two cohorts were provided – children
and young people using the hospice service in the year before the symptom
management service was initiated (2009-10) and children and young people using the
hospice service the year after the True Colours Team was established (2011-12).
These data underwent analysis by the Health Economist at the Marie Curie Palliative
Care Research Unit at University College, London.
4.4 Strategies of analysis of data
4.4.1 Part 1: Structure and process
The structural components of the context of care were analysed on three levels.
Macro analysis mapped the health, social care, educational and voluntary
organisations with which the True Colours Team interacted during the course of the
project. Mezzo analysis involved descriptive analysis of the composition of the
nursing team in terms of nursing hours and skill mix. Micro analysis involved
descriptive analysis of individuals’ past and present experiences, areas of interest and
academic study.
Process of care data were collated into Excel worksheets and frequencies were
generated for the areas outlined in section 5.3.1.2.
The nursing data collection tool acted as a pre-coded system as data were inputted
into an excel spreadsheet by the team administrator. Monthly team data sets for the
12 months between April 2011 and March 2012 were analysed descriptively using
Excel functions and frequencies of nursing interventions and role activity generated.
19
4.4.2 Evaluation Part 2: Outcomes of service delivery and care
4.4.2.1 Analysis of quantitative data
Quantitative data from the structured elements of questionnaires from all
stakeholders were managed using SPSS version 19. Basic descriptive statistics were
generated to illustrate responses. Missing data were recorded (and are identified in
the results tables against the individual variable) and valid percentages were
generated. Non parametric statistical tests were used to compare the three groups
of respondents. Responses to the ACT parents service assessment tool were
managed as above and were compared with identically derived data from a local
palliative care review in Cambridgeshire although this review did not include
bereaved parents (Maynard, 2009).
Questionnaire responses from the True Colours Team were compiled and analysed
as part of the evaluation day.
4.4.2.2 Analysis of qualitative data
Qualitative data from the two open-ended questions, to elicit information on
perceived benefits, challenges and ideas for improvement, were transcribed verbatim
by the Project Administrator into Microsoft Word 2007. Data were analysed
thematically using a framework approach whereby text was summarised into a
matrix and arranged by categories and participants. Thematic analysis was
undertaken independently by the Nurse Consultant and the Care Development
Manager and discussion facilitated the clarification and description of the coded
patterns amongst the data.
4.4.2.3 Integration of findings
Structural mapping, nursing activity and process data outlined in Part 1 were
combined with the findings of Part 2 using the Logic Model development framework
(Taylor-Powell and Henert, 2008). This facilitated the exploration and examination of
relationships between structural context of care, nursing investments, activities and
outcomes.
20
5 Findings
5.1 Evaluation Part 1: The context and process of care
5.1.1 Context of care: Macro analysis
The True Colours Symptom Management Service was delivered across an area of
approximately 5125 square miles, predominantly rural in nature, with a few areas of
high population density and with a total population of 2.8 million (ONS, 2011).
Population estimates calculated 690,000 children aged <19 years (ONS, 2011). The
prevalence rate of 32:10,000 identified by Fraser et al (2011) showed that there
were likely to be a minimum of 2,208 children who might need access to palliative
care at some point in their life journey. The map below shows the network within
which the team works with the EACH catchment area delineated by the ‘purple’
boundary. The purple and orange stars identify base hospice locations and the
number of health and social care providing organisations with whom the team
interacted are outlined in Table 2.
Table 2 Interaction with health and social care providing organisations
within the network
Number
Acute trusts with inpatient facilities for children 10
Neonatal intensive care units offering neuro-protection 2
Local neonatal units 6
Mental health trusts 4
Community services trusts 4
Primary care trusts 8
Community children’s nursing teams 9
Emerging clinical commissioning groups 12
Local authorities 4
Hospice services in the EACH area 3
Hospice services bordering the EACH area 3
21
Source: East Of England Annual Report 2011
22
5.1.2 Context of care: Mezzo analysis
Team profile and key milestones
Role Specialism Apr May Jun Jul Aug Sep Oct Nov Dec Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec Jan Feb Mar
Administrator (0.8 FTE)
Lead Nurse (0.5 FTE)
N1 Hospice
N2 Hospice
N3 PICU*
N4 Community
N5 (0.8 FTE) Community
N6 Hospice
N7 PICU
N8 Community
N9 (0.8 FTE) PICU
Care Development Manager
Total Band 7 FTE 2.5 2.5 3.5 3.5 3.5 3.5 3.5 4.3 4.3 4.3 4.3 4.3 4.3 4.3 4.3 4.3 4.3 4.3 4.3 4.3 4.3 5.1 5.1 5.1
Total Band 6 FTE 1 1 2 2 2 2 1 1 1
Total Nurse FTE 2.5 2.5 3.5 3.5 3.5 3.5 3.5 4.3 4.3 4.3 4.3 4.3 4.3 4.3 4.3 5.3 5.3 6.3 6.3 6.3 6.3 6.1 6.1 6.1
Band 6
Band 7
Maternity Leave
*Paediatric Intensive Care Unit
Team Member 2012
Fa
iled P
sych
olo
gy P
ost
Re
cru
itm
en
t
2011
Sta
rt o
f 2
4/7
Se
rvic
e
2010
EA
CH
Pe
rma
nen
t P
ost
Ava
ilable
Eva
luatio
n A
wa
y D
ay
The team of four CNSs supported by the original Grant Award was supplemented
by EACH to include a fifth CNS who came into post in September 2011. Additional
junior nursing posts, funded by EACH during organisational reconfiguration, were
implemented as rotational opportunities from two of the hospice locations. These
changes resulted from the facilitated Team day held in April 2011 which explored the
findings from the formative evaluation and evolving current practice across the wider
CPC community.
5.1.3 Context of Care: Micro analysis
The recruited team had a range of previous experience across hospice, community
and acute sector backgrounds. Table 3 demonstrated this breadth and depth of
knowledge and outlined the range of academic and practice based study undertaken
during the project period.
23
Table 3 Knowledge of nurses and range of academic study undertaken
Nurse Recent nursing background
Post nursing qualification
Area of interest or expertise
Study or training courses completed since April 2011
N1 Hospice nursing manager
ENB 240, 998 Palliative Care Certificate. Year 1 children’s advanced nurse practitioner MSc
Oncology Independent and supplementary prescribing Children’s Advanced Nurse Practitioner
N2 Hospice nursing manager
Mentoring- 2010 Palliative care module- 2011
Disability and complex health care needs
Advanced communication skills at masters level
N3 PICU none PICU and disability none
N4 Children’s community nursing senior staff nurse
BSc Nursing Independent and supplementary prescribing
Oncology, end of life care
BSc dissertation
N5 Children’s hospital nursing tertiary centre Children’s community nursing senior staff nurse
BSc Acute Children’s Nursing Independent and supplementary prescribing
Neuro-medical palliative care, end of life care Working with young people
Masters module in palliative care
N6 Team leader Diana palliative care team Children’s community nursing
BSc Nursing (child branch), mentoring, leadership, pain management, bereavement.
Oncology, end of life symptoms, working with students/ junior staff.
Leadership Advanced Assessment skills
N7 Children’s hospital nursing and Hospice nursing
Mentorship Interested in respiratory, palliative care, disability and complex care needs
Basic Life Support, anaphylaxis, ventilation toolkit, Neonatal Palliative & End of Life care conference
N8 Children’s hospital intensive care nursing. Hospice nursing
Mentoring Emergency Paediatric Life Support Paediatric Intensive Care Unit course Care of the acutely ill adult
Interested in everything at the moment!
Transition study day. Neonatal pathway study day. Independent and Supplementary Prescribing
N9 PICU Children’s hospital nursing
Neuro-oncology
24
5.1.4 Process of care: How was 24/7 care delivered?
Nurse recruitment commenced in November 2009 and posts were filled in April
2010 when EACH committed to continue roles at the end of the grant funding.
During April to September 2010 the team standards were set and operating
procedures developed.
From October 2010 the CNSs and Nurse Consultant delivered the symptom
management service across the EACH catchment area. The service was delivered
Monday to Friday 8-6pm with an on call ‘out of office hours’ service provided at
night and weekends. Access to the service was through referral by professional or
family members or via a care pathway (oncology and neonatal patients). Families and
professionals were given one low call charge number to contact the team day or
night. The team Administrator operated the base during office hours and a call
handling service was commissioned to manage ‘out of office hours’ calls. This service
acted as a lone working ‘buddy’ if nurses were called out to a family home at night.
4.3 full time equivalent Clinical Nurse Specialists were required to run the 24/7
service on a 1:5 rota with the Nurse Consultant.
On call was delivered from the nurses’ homes or around their home vicinity to
enable swift response if required. Diary management ensured that if overtime was
worked at night or the weekend another team member stood in for planned
appointments. Scheduled appointments with families were kept to a minimum on
Mondays when allocated on call at a weekend.
Junior palliative care nurses who joined the team in July/September 2011 contributed
to ‘local’ on call arrangements which were established as an anticipatory measure
when a child was in the end of life phase. Table 4 shows the number of days when
local on call with colleagues from Community Children’s Nursing Teams (CCNT)
and the EACH hospice teams was initiated. When local on call was in place care was
triaged and coordinated by the True Colours CNS and local teams mobilised as
necessary.
Table 4 shows the frequency of invoiced calls during on call periods and the number
of evenings, nights or weekends in each month when families or EACH hospice
25
teams used the service out of hours. One hundred and twenty seven calls were
received on 97 days. The service was accessed out of hours on 18% of days during
the 18 month period (October 2010 to March 2012).
Table 4 - Frequency of telephone calls during on call periods October 2010 to March 2012
Number of
calls invoiced
by call
handling
service
Number of days
when on-call
used
Local on call in
place (days)§
Oct 2010 5 5 0
Nov 2010 9 9 0
Dec 2010 0 0 0
Jan 2011 1 1 0
Feb 2011 6 5 0
Mar 2011 12 9 0
Apr 2011 7 4 0
May 2011 10 6 0
Jun 2011 4 4 0
Jul 2011 4 4 0
Aug 2011 5 3 0
Sept 2011 10 1 2
Oct 2011 4 5* 10
Nov 2011 7 3 2
Dec 2011 6 10* 5
Jan 2012 11 6 1
Feb 2012 15 8 4
Mar 2012 11 9 0
Total 127 97 24
§ Band 6 team members only does not include CCNT involvement
*Hospice staff phone CNS directly and not via call handling service
26
Graph 1 Frequency of out of hours work October 2010 to March 2012
0
10
20
30
40
50
60
Oct-
10
Nov-1
0
Dec-1
0
Jan-1
1
Feb-1
1
Mar-
11
Apr-
11
May-1
1
Jun-1
1
Jul-11
Aug-1
1
Sep-1
1
Oct-
11
Nov-1
1
Dec-1
1
Jan-1
2
Feb-1
2
Mar-
12
Month
Ho
urs
of
overt
ime p
aid
During the 18 months of the project the calls from families and hospice staff about
individual children generated 365 hours of nursing work (inclusive of travel time)
outside contracted hours to a total cost of £8,540.
Graph 1 demonstrates the typical ‘peaks and troughs’ of out of hours work. Median
21 hours (range 0-48 hours) of over-time was worked per month.
5.1.5 Process of care: Caseload demography
Over the period of the project from October 2010 to March 2012 the True Colours
Team cared for 358 children and young people. Analysis of caseload demographics
(Table 5) at the beginning (April 2011) and end (March 2012) of the final full year of
the project showed that the caseload consisted of slightly more males than females
but was relatively even in terms of age range except for those on the caseload aged
less than one year.
27
Table 5 Demographics of active caseload, April 2011 and March 2012
April 2011
(n=45) (%)
March 2012
(n=54) (%)
Male 25 (56) 33 (61)
Female 20 (44) 21 (39)
< 1 year of age 7 (16) 11 (20)
aged 1-4 11 (24) 14 (26)
aged 5-10 13 (29) 16 (30)
aged 11-18 13 (29) 13 (24)
aged >19 1 (2) 0
Graph 2 Caseload by ACT categories April 2011 and March 2012
ACT Diagnostic Categories April 2011
40%
9%
24%
27%
ACT Group 1 ACT Group 2 ACT Group 3 ACT Group 4
ACT Diagnostic Categories March 2012
35%
4%
28%
33%
ACT Group 1 ACT Group 2 ACT Group 3 ACT Group 4
ACT Group 1: Life threatening conditions for which curative treatment may be feasible but can fail
ACT Group 2: Conditions when premature death is inevitable, where treatments aim at prolonging life and allowing participation in normal activities
ACT Group 3: Progressive conditions where curative treatment is exclusively palliative and may extend over many years
ACT Group 4: Irreversible but non progressive conditions causing severe disability leading to susceptibility to health complications and premature death
The overall distribution of the caseload in terms of ACT categories was similar for
the two time periods showing an even split between category 1, 3 and 4 in March
2012. Two fifths of the caseload belonged to ACT category 1 in April 2011 (Graph
2).
28
Graph 3 Caseload dependency: percentage of caseload receiving low,
medium and high number of interventions April 2011 (n=45) and March
2012 (n=54)
Caseload dependency - number of interventions
April 2011
45%
13%
42%
Low input 0-5 Medium input 6-9 High input 10+
Caseload dependency - number of interventions
March 2012
74%
7%
19%
Low input 0-5 Medium input 6-9 High input 10+
Low input: 0-5 nursing interventions per month
Medium input: 6-9 nursing interventions per month
High input: more than 10 nursing interventions per month
There are clear differences in the number of children receiving high numbers of
interventions between the two time periods.
In April 2011 just less than half (42%) of the caseload received 10 or more face to
face contacts but in March 2012 only two fifths (19%) of the caseload received 10 or
more interventions.
29
Graph 4 Caseload dependency: percentage of caseload receiving low,
medium and high input in hours April 2011 (n=45) and March 2012 (n=54)
Caseload dependency - hours of interventions April
2011
84%
7%
9%
Low input <5 Medium input 5-10 High input >10
Caseload dependency - hours of interventions March
2012
74%
15%
11%
Low input <5 Medium input 5-10 High input >10
Low input: Less than 5 hours of nursing interventions per month
Medium input: Between 5 and 10 hours of nursing interventions per month
High input: More than 10 hours of nursing interventions per month
Time taken with interventions showed that three quarters of the caseload had up to
five hours intervention in the designated months. Between nine and 11 percent of
the caseload had greater than 10 hours of interventions in the two time periods.
30
Graph 5 Frequency of episodes of direct clinical intervention April 2011 to
March 2012
0
100
200
300
400
500
600
700A
pr-
11
May-1
1
Jun-1
1
Jul-11
Aug-1
1
Sep-1
1
Oct-
11
Nov-1
1
Dec-1
1
Jan-1
2
Feb-1
2
Mar-
12
Month
No
. o
f ep
iso
des
Direct clinical interventions ranged between 380 and 640 episodes of care in a
month. In total there were 6,286 interventions by all members of the Team (Graph
5). The team profile showed that the number of nurses available ranged from 4.3
FTE in April 2011 to 5.1 FTE in March 2012. Median interventions delivered per
month was 536 and median interventions per nurse per month was 95 (range 60 to
147 per nurse per month).
31
Graph 6 Travel time between April 2011 and March 2012
0
10
20
30
40
50
60
Apr-
11
May-1
1
Jun-1
1
Jul-11
Aug-1
1
Sep-1
1
Oct-
11
Nov-1
1
Dec-1
1
Jan-1
2
Feb-1
2
Mar-
12
Month
Tim
e i
n h
ou
rs
Between April 2011 and March 2012 the Team drove 23,613 miles and spent 415
hours travelling across the region to a cost of approximately £10,000.
5.1.6 Process of care: Daily nursing activity
The following six graphs relate to nursing interventions grouped by type of activity.
The first five account for 96% of the total number of nursing interventions recorded
during the year. Each graph is complemented by one or more case studies written by
the CNSs themselves to illustrate the depth and range of nursing work.
32
Graph 7 Frequency of care planning and review April 2011 to March 2012
0
5
10
15
20
25
30
35
40
45
50
Apr-
11
May-1
1
Jun-1
1
Jul-11
Aug-1
1
Sep-1
1
Oct-
11
Nov-1
1
Dec-1
1
Jan-1
2
Feb-1
2
Mar-
12
Month
No
of
Occasio
ns
Care planning Evaluation/review of EoL Care plan
Median reported care planning episodes was 19.5 (range 1 to 27) and end of life
(EoL) care planning was 6 (range 2 to 14) (Graph 7).
The following case study shows how useful the Symptom Management
Plans can be:
“A 3 month old baby with a very rare syndrome was referred to TCT from the
neonatal team for out of hours support in the community for when they were
discharged home.
After a slight delay the baby was discharged but was re-admitted to hospital a few
days later with blood in her stools and not tolerating feeds. Discussions ensued
between the lead consultant and family it was agreed that due to her complex
condition active treatment would be withdrawn and the family were keen to take
her home for end of life care.
As I was on the hospital ward at the time I was able to co-ordinate the family to
discharge and arranged to drop off the medication later that afternoon once they
had been dispensed. This allowed the family time to visit NICU/SCBU and say their
goodbye’s and still make it home whilst it was light to ride their tractor which was
one of their wishes for their baby.
33
Later that evening I visited the family with medications to help with pain and
distressing symptoms that the baby might experience. I drew up some syringes of
buccal Midazolam and Diamorphine for the family to give if required and
demonstrated how to administer. We received a couple of phone calls overnight and
gave instructions on what medication to give and arranged a joint visit with the
community nursing team the following day.
After review the family decided that they were happy to call us when required and
did not feel they needed daily visits or phone calls.
The baby survived for three weeks after being discharged home and during that
time her pain was the main symptom. Working with her lead consultant and
discussing the options with her parents we were able to draw up a symptom
management plan which worked for the family and empowered them to care for
their baby at home themselves, which was their main wish.
I found this a really positive experience of how the True Colours Team were able to
empower the parents to carry out all cares for their baby, knowing that a specialist
was at the end of a phone for advice or support at any point. It was also a good
example of joint working between the community nursing team and lead
consultant”.
34
Graph 8 Frequency of symptom management interventions April 2011 to
March 2012
0
10
20
30
40
50
60A
pr-
11
May-1
1
Jun-1
1
Jul-11
Aug-1
1
Sep-1
1
Oct-
11
Nov-1
1
Dec-1
1
Jan-1
2
Feb-1
2
Mar-
12
Month
No
of
Occasio
ns
Assessment of symptoms Development of SMP Evaluation of SMP
Frequency of reporting of Assessment of Symptoms ranged between 13 and 52
(median 36). Median symptom management plans (SMPs) developed per month was
11 (range 1 to 27) and evaluation of these plans was reported median 24.5 times
(range 7 to 55) per month.
The following case study illustrates how the team worked collaboratively
with other professionals:
“I received a referral for a 17 year old girl with a recurrent metastatic
osteosarcoma. She had recently arrived in the UK from Russia initially for a private
second opinion and subsequently private palliative radiotherapy treatment.
Following radiotherapy she deteriorated quickly with uncontrolled symptoms,
particularly pain which impacted on her level of anxiety, social interaction and
mobility. As a private patient she was unable to access some of the NHS care
available however EACH and the True Colours Team were able to offer support.
In the UK she was living with elderly paternal grandparents, while her step-father
returned abroad to work. Although she understood and spoke some English, her
mother’s understanding was minimal and grand-parents spoke no Russian. Initially a
35
detailed history and assessment of symptoms was obtained, utilising an interpreter.
Discussions about possible respite and emotional support available at the hospice
were explored however both she and her mother declined this service as they did
not feel comfortable with hospice care. As a result the focus remained on symptom
management which was provided by the True Colours Team.
I completed extensive liaison with the Teenage and Young Adults Team at the
tertiary hospital to obtain a detailed clinical history. This team supported the
development of a symptom management plan. Plans are fluid pieces of work,
adjusted as and when the child or young person’s symptoms change or deteriorate.
In this case however, the family were concerned about returning to Russia due to a
lack of expertise in palliative care. I completed a more detailed plan which included
extensive end of life symptom management. As the grandparents were the main
route of communication I slowly developed a trusting relationship with them. Both
were extremely anxious and felt ‘out of their depth’ initially. I therefore acted as first
point of call for symptom concerns, treatment discussions, and practical assistance;
for example; organising appropriate prescriptions and liaising with the hospital and
local GP.
As a result of this ongoing contact I was able to frequently assess symptoms both
by telephone and in person, therefore providing a responsive service and greatly
improving symptoms and quality of life. The True Colours Team provided an on call
service 24/7 and this meant that the family had access to experienced palliative
care clinical nurse specialists.
This was at times a challenging case as on completion of the palliative radiotherapy
she was discharged from the tertiary centre. Her GP became the medical lead who
was inexperienced in prescribing for palliative care and therefore reliant on my
expertise. This illustrates the role of nurse specialists in palliative care leading and
supporting other professionals. When symptoms were controlled the family
arranged to return to Russia and my role within this was to prepare medications
and documents for the airline to ensure a smooth journey. I have offered follow up
emotional support to the grandparents since she left the UK and they have reported
they ‘couldn’t have managed without it’.”
36
Graph 9 Frequency of interventions of joint working and care
coordination April 2011 to March 2012
0
10
20
30
40
50
60A
pr-
11
May-1
1
Jun-1
1
Jul-11
Aug-1
1
Sep-1
1
Oct-
11
Nov-1
1
Dec-1
1
Jan-1
2
Feb-1
2
Mar-
12
Month
No
of
Occasio
ns
Care co-ordination MDT attendance Joint Visiting
Graph 9 illustrates information reported in the daily diaries related to care
coordination and partnership working with external health and social care teams in
face-to-face situations. With the exception of January 2012 all three activities were
reported in all months. Care coordination occurred median 27.5 times per month
(range 0 to 52). Multidisciplinary team (MDT) meeting attendance was reported
median 10.5 times per month (range 6 to 25). Joint visiting occurred median 9.5
times (range 4 to 26 per month).
The following case study illustrates the difference that the team can make
in a lead role, bringing together professionals from different
organisations:
“Over the past few months I have been working as lead professional for a child with
relapsed tumour. The family had ongoing concerns with their local hospital due to
late diagnosis at initial presentation and late diagnosis at relapse. The family
understood that there was no further treatment that could be offered to their child.
They decided that they would like to come to the hospice for ‘end of life’ care. As
37
the local hospital team was not involved I became the lead professional and
coordinated the care for the child whilst in the hospice. The symptom management
plans were written by the palliative care consultant at the tertiary centre, I ensured
that the plans were up to date and liaised with the consultant regarding the child’s
symptoms on a regular basis. I ensured that my clinical assessments of the child
were robust enough to provide information to the consultant to be able to get advice
and changes to the symptom management plan when required. I organised regular
MDT meetings to discuss his care and ensured the child had regular contact with a
medical practitioner which facilitated certification of cause of death.
The child stabilised and consequently stayed at the hospice for four months. Due to
the stabilisation of the child discussions were had with the family regarding possible
further treatment. However, due to the complicated nature of his condition it was
decided that he should not have any treatment. The oncology consultant then made
plans with the family to make contact weekly to discuss any questions they may
have regarding his future care wishes. During this time I ensured that the staff had
all the available drugs and I prescribed all medication, regular and when necessary,
on the Medicines Administrative Record sheet to ensure that his symptoms could be
managed quickly and effectively throughout his stay at the hospice. These
prescriptions were supported with the up to date symptom management plans and
clinical assessments of his condition. Training needs were identified during his stay
and these were dealt with when required to ensure that the relevant trained staff
would always be available to ensure all his needs were met.
The collaboration of the different teams that helped care for this child worked really
well. Initially the team around the child and family was very small as the family did
not want the local teams to be involved at all. This made it difficult to get medical
advice and regular consultant visits. However, facing this difficulty the palliative care
consultant liaised regularly with the hospice GP and supported the surgery to
provide medical back up. Although the MDT was significantly smaller than other
cases I have worked on, all members of the team worked together to ensure a
seamless package of care.”
38
Graph 10 Nursing interventions related to medicines management April
2011 to March 2012
0
5
10
15
20
25A
pr-
11
May-1
1
Jun-1
1
Jul-11
Aug-1
1
Sep-1
1
Oct-
11
Nov-1
1
Dec-1
1
Jan-1
2
Feb-1
2
Mar-
12
Month
No
of
Occasio
ns
Administration of medicines Syringe Driver Management Intravenous Line Management
A variety of clinical nursing activities related to medicines management. Syringe
driver management reported for administration of subcutaneous medicines was
undertaken in three quarters of the months (median 2.5, range 0 to 18) and
intravenous medicines administration and central line management in all but one
month (median 5.5, range 0 to 21 per month). Occasions of administration of
medicines was median 4 (range 0 to 10) times per month (Graph 10).
The following case study shows how the experience of the team can help
develop better skilled and knowledgeable staff across the sectors:
“I was asked to be involved with enabling a 16 year old with Cystic Fibrosis to go
home from an adult hospital for end of life care. This young lady was well known to
children’s health and social care services and her mother was keen to manage care
at home by herself. I needed to explain to this family that if they wanted their child
to die at home they would need the support of professionals. After much persuasion
they agreed.
39
I led the writing of a symptom management plan with advice from the adult
consultant and with endorsement from the GP. This plan was amended almost
every day. I organised a ‘just in case box’ with appropriate contents and
prescriptions.
The young woman remained well for a few days and this was to the opportunity to
introduce new staff from the other nursing teams (CCNT and Hospice) as we would
need to work together as her condition worsened. I facilitated an MDT meeting
where we agreed a rota for daily syringe driver care and care of her intravenous
access device and the provision of psychosocial support. It was very beneficial being
a non medical nurse prescriber as I was also able to sign the drug charts and go out
during the day to support the CCNs in making decisions about drug increases and
changes.
The CCNT became the first on call for the family and used the True Colours Team
as back up 2nd on call, who they rang frequently for advice and guidance. By this
time a very good relationship had been established with the mother which made the
daily visits and phone calls much easier. This young lady also spent some periods in
the hospice during this time and staff from the hospice also called TCT Team
regularly for advice and support. As the lead professional I was updated by all the
Teams on a daily basis and this helped as I was then able to feed back to everyone
else who was involved”.
40
Graph 11 Frequency of contact with professionals – liaison and updates
April 2011 to March 2012
0
50
100
150
200
250
300
350
400
450
500A
pr-
11
May-1
1
Jun-1
1
Jul-11
Aug-1
1
Sep-1
1
Oct-
11
Nov-1
1
Dec-1
1
Jan-1
2
Feb-1
2
Mar-
12
Month
No
of
Occasio
ns
Contact with Professionals Caseload Update Referral to other professional agency
Extensive liaison with external teams and hospice services was reported throughout
the year (Graph 11).
Contact with external professionals ranged between 233 to 463 occasions (median
315.5 per month) for the team as a whole and median 55 per nurse (range 38 to
100) per month.
This case study illustrates the importance of collaboration and team
working:
“I have been working with a 16 year old girl with a metastatic clear cell sarcoma.
She had a two year history of hip pain and had seen her GP who put the pain down
to muscle strain. Her Physio suggested that she saw a private orthopaedic
consultant who suspected a sarcoma and referred on to adult oncology due to her
age. This consultant used very adult language which was not really appropriate for
her level of maturity. She was then prescribed palliative chemotherapy by a teenage
and young adult (TYA) consultant. By this time the girl and her family were very
41
reluctant to have new professionals involved and chose not to access local
professionals. This young lady was referred to the TCT team as a local point of call
for symptom management and support. I have taken a very slowly, slowly approach
and at her request she wanted to meet me at the children’s hospice with her family.
Now I am able to make contact regularly to ensure her symptoms are well
controlled. I have developed a symptom management plan and liaised with the
adult symptom management team at the tertiary hospital. I have also been able to
visit the TYA centre to meet with the nurse specialists and the consultant. As a joint
team we visited the girl when she was an inpatient having her chemotherapy. This
gave the family confidence in the TCT team as they realised that we all worked
together as a team for her and her family. It has been agreed that I will liaise with
the family GP for local medical support. Her pain is now well managed and this has
given her much better quality of life. There is a clear plan of treatment to follow
when possible symptoms arise. The TCT team are on call for her 24/7 and this
means that the family have access to nurses who know and understand the stressful
situation they have been through as well as her current symptom management
plan”.
42
Graph 12 Psychosocial interventions April 2011 to March 2012
0
10
20
30
40
50
60
70
80
90
100
Apr-
11
May-1
1
Jun-1
1
Jul-11
Aug-1
1
Sep-1
1
Oct-
11
Nov-1
1
Dec-1
1
Jan-1
2
Feb-1
2
Mar-
12
Month
No
of
Occasio
ns
Advice support Teaching parent Liaison with parent
Graph 12 reports psychosocial interventions with family members which accounted
for 3% of the total number of nursing interventions recorded in the year. Teaching
and supporting parents with nursing skills was reported on a minority of occasions
but occurred consistently across the months (Advice and support - median 19, range
6 to 33, Teaching parent – median 3, range 0 to 7, Liaison with parents in relation to
psychosocial need – median 54, range 34 to 87).
This case study demonstrates successful partnership working across
sectors and agencies:
“A teenager, who had received symptom management advice from the True Colours
Team in 2011, re-referred herself this year by writing a letter to me.
This young lady has undergone treatment for a brain tumour which affected her
pituitary gland resulting in the need for daily artificial hormone replacement therapy.
She also developed severe hip damage resulting in the need for an urgent hip
replacement. Her re-referral to the True Colours Team came when she felt that
she was “desperate” and that no one could help with her pain anymore, as
everything she had tried was ineffective.
43
I visited the young lady at home and carried out a full pain assessment. She
reported severe pain which not only affected her physically, psychologically and
emotionally, but it was also affecting her parents as they found her emotional state
a challenge to deal with as she was very moody with them. Her pain was impacting
on home, college and social life. She reported feeling very frustrated and isolated
from family and friends because of the pain.
We talked together about medication which she had taken in the past and what
had worked and not worked. She was reluctant to take morphine due to the side
effect of drowsiness, but realised that she would probably have to accept this side
effect to get some adequate pain relief, as all other analgesics tried had not been
effective.
A low dosage of morphine was started following a discussion with her GP. There
was little beneficial effect to begin with, and she experience drowsiness, but she
persisted with a slowly increasing dose and then, following a discussion with an adult
palliative medicine consultant from a pain clinic at an adult hospice, she agreed to
the addition of another medication which would work in combination with the
morphine to enhance the analgesic effect. She declined the opportunity to be
reviewed at this pain clinic preferring to receive support from this consultant
through me as the True Colours Team Clinical Nurse Specialist. This partnership
worked well, as the adult physician advised via phone and email, and the young
lady’s GP was happy to prescribe following a phone call with me. So the True
Colours Team were able to provide the support in the community and we were able
to avoid the need for her to visit another institution. All care continued in the
community.
As a result of the intervention from the True Colours Team this young lady’s pain is
better controlled. Her pain has not gone away, but has reduced in severity which
has meant that her quality of life has significantly improved. She has a date for the
orthopaedic surgery and is feeling better able to cope with life and maintaining her
independence.”
Case study illustrating how the team has facilitated achievement of
Family Wishes:
“The team were recently able to help facilitate a child and his family to go on
holiday to Centre Parcs for their last holiday together. The child was approaching
the end of his life and the family wanted to make their son’s last days special. Due
to excessive vomiting the child needed to have a continuous infusion of anti sickness
medication via a pump. The medication in the pump needed to renewed on a
daily basis and the child required daily reviews to ensure that his symptoms were
adequately controlled. The Symptom management team were able to visit him at
Centre Parcs and enable the family to have a last holiday together. The family had
44
access to the 24 hour phone support if there were any complications and they
needed further support.
I will always remember this case as the child was often quiet and withdrawn when I
had visited him at home, but when I saw him at Centre Parcs he was much more
relaxed. He was surrounded by his parents, grandparents, aunt, uncle and cousins,
and was animated by the squirrels that were playing outside his window and the
ducks that kept appearing looking for food. The family are now left with special
memories and photographs of their last holiday together.”
Graph 13 Perception of role during clinical interventions April 2011 to
March 2012
0
500
1000
1500
2000
2500
3000
3500
4000
4500
Practitioner Patient
Advocate
Clinical
Leader
Collaborator Educator Researcher Manager
Role Descriptor
No
of
inte
rven
tio
ns
This graph shows that nurses perceived themselves as collaborators for greater than
4000 interventions and practitioners for 3500 interventions over the year. On a
minority of occasions CNSs perceived themselves as educators, researchers or
managers.
45
The practical components of the service were also rated highly, with three quarters
of respondents reporting that the SMPs and practical support and advice were very
useful.
The following case study gives an example of this in practice:
“One of the children with a progressive neurological condition well known to the
Hospice Service became very unwell with pneumonia and it became clear that he
was unlikely to survive. The Norfolk 24/7 symptom management team became
involved in providing 24 hour telephone support so that the family could keep their
son at home. I wrote a symptom management plan so that all staff had guidance
with knowing how to manage symptoms. I met with the GP to devise a medication
plan including via the sub-cutaneous route. Being supernumerary enabled me to
have the time to go out and meet with the GP, to get the prescription written,
collect the medication and then start the 24 hour infusion when needed. I also had
the time to liaise closely with the GP and meet with her in the child’s home to
review symptoms regularly, and ensure that the family felt supported. The True
Colours Team provided back-up telephone support to the Norfolk Team for difficult
to manage symptoms, and True Colours Team advice was sought in the weekend
prior to his death.
This was a good example of the two teams working together, and this family was
hugely thankful for the support which they received which enabled them to keep
their son at home. Collaboration between the hospice nurses, the Norfolk 24/7
Team and the TCT Team enabled 24 hour care at home. Nurses and carers
provided care, True Colours Team were able to provide specialist advice on
symptom management issues and the Norfolk 24/7 Team was able to visit daily (or
more frequently) for symptom reviews and medication renewal.
This was a challenging case as there was minimal involvement from the hospital
consultant and care was led by the True Colours Team with the GP. It emphasized
to me how children who are not receiving care from an oncology team are not
always fortunate enough to have expert palliative care advice from a paediatrician,
and how vital it is that all children can have equal access to care from a qualified
paediatrician with expertise in palliative care. This job has enabled me to have the
time to be able to deliver quality care without feeling that I’m neglecting another
part of my role, symptom management is now the emphasis of my role and
something which makes this job very rewarding. It is great that EACH has
progressed in this way so that we can deliver care much more flexibly and with
much more confidence”.
46
5.1.7 Process of care: Delivery of end of life care
Table 6: Demographics of children (n=51) from caseload who died
between October 2010 to March 2012
Number of deaths
(n=51) (%)
Male 28 (55)
Female 23 (45)
<1 year of age 17 (33)
aged 1-4 8 (16)
aged 5-10 10 (20)
aged 11-18 16 (31)
aged >19 0
There were more male deaths than females and the largest proportion of deaths
occurred in the <1 year age group.
Case study to illustrate the advocacy role played by the team:
“Over recent months, I have been working as part of a multidisciplinary team to
deliver palliative care and symptom management to a boy with a rapid degenerative
condition. This has involved me working closely with hospital, hospice and
community staff, to co-ordinate this child’s care, avoid duplication and encourage
proactive thinking with regards to symptom management. I have also worked
closely with the child and his family to help them understand what is happening and
plan for their child’s end of life care and beyond. Throughout this time, I have
needed to act as advocate for both the child and family. Many challenges have
arisen within this period; one of the hardest being finding a suitable way to manage
the young man’s breathing, which has been affected neurologically. This has raised
the need for ethical discussions as a multi-disciplinary team about its management
and how invasive that management should be”.
47
Graph 14 ACT diagnostic categories of children dying between October
2010 and March 2012
ACT Group 1: Life threatening conditions for w hich curative treatment may be feasible but can fail
ACT Group 2: Conditions w hen premature death is inevitable, w here treatments aim at prolonging life and allow ing participation
in normal activities
ACT Group 3: Progressive conditions w here curative treatment is exclusively palliative and may extend over many years
ACT Group 4: Irreversible but non progressive conditions causing severe disability leading to susceptibility to health
complications and premature death
58%
4%
20%
18%
ACT Group 1 ACT Group 2 ACT Group 3 ACT Group 4
More than half of deaths during the project were children with LTCs (ACT Group 1)
with two fifths of deaths occurring from progressive, degenerative conditions and
those with profoundly disabling conditions which confer significant vulnerability.
48
Graph 15 Location of end of life care October 2010 to March 2012
54%
24%
20%
2%
Home Hospice Hospital Other
Fifty one children were supported by the Team at end of life all of whom died in
their families’ preferred place. More than 50% of children and their families chose to
die at home (Graph 15).
The following case study illustrates how the team facilitated choice of
location of death:
“The neonatal palliative care pathway is in the process of being piloted from the neonatal
unit. EACH is acting in a coordinating role for nursing care for babies and support for
families. The first baby to receive care via the pathway approach was diagnosed antenatally
with a catastrophic abnormality and following lengthy discussions with their consultant
parents expressed a wished for palliative and supportive care. Their preference was to be
supported in caring for their baby at home. Following safe delivery they all travelled home
together and had two lovely days at home getting to know their new baby and sharing him
with their hugely supportive community of friends. I received an urgent call at the weekend
as the family felt that it was ‘time to get the palliative team’ involved. I travelled to the
home with a ‘just in case’ box, rather apprehensively as I had not met the family before,
working through in my head the likely scenarios. On arrival, I quickly weighed up the
49
situation, built rapport with both parents and assessed the Baby’s condition. We agreed a
management plan to relieve respiratory distress and to prepare and manage for other
symptoms such as poor temperature control, inconsolable crying, and hunger. I taught both
parents how to draw up and to know how and when to administer medications and provide
comfort measures such as skin to skin contact, how to give expressed breast milk to avoid
further compromise to breathing and positioning and handling which would reduce the
impact of respiratory distress as much as possible. These strategies plus the knowledge that
I was available to talk on the phone or visit again during the weekend enabled the families’
choices to be met as their baby died peacefully, 24 hours later, surrounded by his loving
family without any further intervention from health professionals”.
Graph 16 Post death care activities as a percentage of total episodes from
April 2011 to March 2012
25%
29%
5%
21%
20%
Care of Child's Body Debrief Closure Visit Bereavement Follow Up Funeral
Graph 16 outlines the variety of care provided after death for children on the
caseload which accounted for 1% of the total number of nursing interventions
recorded during the year. One fifth of post death care activities related to
attendance at funerals and provision of bereavement follow up support. Almost one
third of activities over the year related to multi-disciplinary debriefs and opportunity
to critically reflect on care and support provided.
50
5.2 Evaluation Part 2: Outcome of service delivery and care
5.2.1 Participants
Figure 4 demonstrates the accrual of participants from a sampling frame of 298
stakeholders across the three groups of family, external professional and hospice
professional. A total of 139 responses were received providing a response rate of
47%. Two family respondents chose to seek help with completion from the Care
Development Manager. Seven family respondents were bereaved indicated by
completion of the bereavement standard items on the ACT Parent Service
Assessment Tool. Replies from professionals were received from medical
practitioners (n=18); nurses (n=75) allied health professionals (n=10), other (n=8),
and missing (n=2).
51
Figure 4 Stakeholder sampling frame and response rates
Stakeholder Sampling Frame
All families on caseload
between 01.04.11 to
31.1.12 n=48
All Care Team employees at
November 2011
n=121
All external professionals in
contact with team between
01.04.11 to 30.11.11
n= 69 medical practitioners
n=60 nurses
First mailing staggered
between December 2011
and January 2012 (purple
paper)
First mailing December
2011 (purple paper)
Overall Family responses
n=26 (54%)
Second mailing January
2012 (yellow paper)
Third mailing February 2012
(white paper)
Second mailing via e-mail
January 2012
Overall External
Professionals responses
n=53 (41%)
Second mailing January
2012 (yellow paper)
First mailing December
2011 (purple paper)
Overall Hospice
Professionals responses
n=60 (50%)
Responses n=27
Responses n=44Responses n=32Responses n=17
Responses n=9 Responses n=1 Responses n=9
Total responses
n=139 (47%)
5.2.2 Combined stakeholder responses
Table 7 reports the combined responses from all stakeholders (n=139). Not all
respondents completed all items so the number of valid responses is indicated
against each item.
52
Table 7 Frequency of combined responses from all stakeholders regarding
the Team standards
To what extent does the True
Colours Team provide:
Not at
all (%)
To
some
extent
(%)
Mostly
(%)
As
much
as
needed
/
wanted
(%)
24/7 around the clock symptom
management advice and support (n=120)
1
(1)
13
(11)
106
(88)
A specialist level of knowledge and
expertise (n=127)
4
(3)
34
(27)
89
(70)
A response to all your telephone or email
queries within 4 hours (n=107)
4
(4)
33
(31)
70
(65)
Assessment of the child’s physical
symptoms (n=118)
6
(5)
23
(20)
89
(75)
Assessment of the child’s emotional
symptoms (n=96)
10
(10)
24
(25)
62
(65)
Development of an appropriate care /
management plan (n=122)
2
(2)
6
(5)
26
(21)
88
(72)
Care and support for the child wherever
needed (e.g. home, nursery, school,
hospice or hospital) (n=117)
3
(3)
24
(21)
90
(77)
A link between home / hospice / hospital,
for the child and family (n=126)
5
(4)
25
(20)
96
(76)
Direction to other services or
professionals as needed (n=118)
3
(3)
29
(25)
86
(73)
Advocacy for the child (n=109) 1
(1)
6
(6)
15
(14)
87
([80)
Note: percentages do not add to 100% due to rounding
Two thirds or more of respondents reported that the team had provided as much as
needed or wanted with all 10 items. The provision of around the clock symptom
management advice and support received was highly valued with most of the
respondents (88%) reporting as much provision as needed or wanted. However,
one tenth of respondents who answered the item regarding assessment of a child’s
emotional symptoms reported that this was provided to some extent only.
With the exception of the two items response to telephone or email queries within
4 hours and assessment of the child’s emotional symptoms, all items scored very
highly with three quarters of respondents indicating the top scores in all categories.
53
Three quarters or more of respondents found all four of the practical elements very
useful (Table 8).
Table 8 Frequency of combined responses from all stakeholders regarding
the usefulness of the practical elements of the service
How useful have you found:
Not at
all
useful
(%)
Some-
what
useful
(%)
Mostly
useful
(%)
Very
useful
(%)
The SMP written by the lead Consultant
or the True Colours Team (n=108)
1
(1)
3
(3)
15
(14)
89
(82)
The practical care given by the True
Colours Team (n=121)
1
(1)
3
(3)
20
(17)
97
(80)
The support and advice given by the True
Colours Team (n=127)
1
(1)
4
(3)
16
(21)
96
(76)
The out of hours telephone / call handling
service (n=99)
7
(7)
19
(19)
73
(74)
Note: percentages do not add to 100% due to rounding
Table 9 Frequency of combined responses from all stakeholders regarding
Team qualities and overall satisfaction
Not at
all (%)
Some-
what
(%)
Mostly
(%)
Extremel
y (%)
How responsive is the True Colours
Team in meeting the child and family’s
needs? (n=125)
1
(1)
4
(3)
20
(16)
100
(80)
How reliable is the Symptom Management
Team? (n=125)
1
(1)
18
(14)
106
(85)
How flexible is the True Colours Team?
(n=120)
3
(3)
27
(23)
90
(75)
How satisfied are you with the service
provided by the True Colours Team?
(n=130)
1
(1)
6
(6)
15
(12)
108
(83)
Note: percentages do not add to 100% due to rounding
Extremely high levels of satisfaction were reported (n=108, 83%) and three quarters
or more of respondents rated the team extremely responsive, reliable and flexible
(Table 9).
54
5.2.3 Comparison between Stakeholder Groups
Comparison of responses between the three groups showed no significant
differences except for the following three items: Usefulness of support and advice
given by the team; usefulness of the out of hours call handling service and extent to
which the team assessed a child’s emotional symptoms. Statistics are reported in the
footnotes of Tables 10 and 11. There were no significant differences noted in the
responses of professionals when compared by their professional backgrounds
(medical, nursing, allied health professional, other).
55
Table 10 Frequency of responses for Team standards by stakeholder group
Family External Professionals Hospice Professionals
To what extent does the
Symptom Management Team
provide:
Not at
all
(%)
To
some
extent
(%)
Mostly
(%)
As much
as needed
(%)
Not at
all
(%)
To
some
extent
(%)
Mostly
(%)
As much
as needed
(%)
Not at
all
(%)
To
some
extent
(%)
Mostly
(%)
As much
as needed
(%)
24/7 symptom management advice
and support
1
(5)
20
(95)
1
(2)
3
(7)
39
(91)
9
(16)
47
(84)
A specialist level of knowledge and
expertise
1
(4)
2
(9)
20
(87)
2
(4)
14
(31)
30
(65)
1
(2)
18
(31)
39
(67)
A response to all your queries
within four hours
1
(5)
7
(35)
12
(60)
2
(5)
11
(29)
25
(66)
1
(2)
15
(31)
33
(67)
Assessment of the child’s physical
symptoms
7
(32)
15
(68)
6
(14)
6
(14)
32
(72)
10
(19)
42
(81)
Assessment of the child’s
emotional symptoms2
4
(27)
11
(73)
5
(14)
3
(8)
28
(78)
5
(11)
17
(38)
23
(51)
Development of an appropriate
management plan
3
(14)
18
(86)
1
(2)
3
(7)
12
(27)
29
(64)
1
(2)
3
(5)
11
(20)
41
(73)
Care and support for the child
wherever needed
2
(9)
20
(91)
1
(2)
8
(20)
32
(78)
2
(4)
14
(26)
38
(70)
A link between home/hospice/
hospital
1
(4)
3
(14)
18
(82)
4
(9)
10
(21)
33
(70)
12
(21)
45
(79)
Direction to other services or
professionals
2
(10)
4
(20)
14
(70)
1
(2)
11
(26)
30
(72)
14
(25)
42
(75)
Advocacy for the child
1
(5)
2
(11)
16
(84)
1
(2)
4
(10)
6
(15)
29
(73)
1
(2)
7
(14)
42
(84)
2 Comparison between external and internal professional groups was significant: U= 629; p=.045; r=.22
56
Table 11 Frequency of responses for usefulness of practical elements, Team qualities and satisfaction
Family External Professionals Hospice Professionals
How useful have you found: Not at
all
Some-
what
(%)
Mostly
(%)
Very
(%)
Not at
all
(%)
Some-
what
(%)
Mostly
(%)
Very
(%)
Not at
all
Some-
what
(%)
Mostly
(%)
Very
(%)
The SMP written by the lead
Consultant or the Team
1
(6)
2
(11)
15
(83)
1
(3)
2
(5)
7
(18)
28
(74)
6
(12)
46
(88)
The practical care given by the
Team
2
(11)
16
(89)
1
(2)
2
(4)
7
(15)
38
(79)
1
(2)
11
(20)
43
(78)
The support and advice given by
the Team3
2
(9)
20
(91)
1
(2)
3
(6)
11
(23)
33
(69)
1
(2)
13
(23)
43
(75)
The OOH telephone / call
handling service4 5
1
(6)
17
(94)
1
(3)
7
(19)
28
(78)
6
(13)
11
(25)
28
(62)
Team Qualities and Overall
Satisfaction
Not at
all
Some-
what
(%)
Mostly
(%)
Extremely
(%)
Not at
all
Some-
what
(%)
Mostly
(%)
Extremely
(%)
Not at
all
Some-
what
(%)
Mostly
(%)
Extremely
(%)
How responsive is the Team in
meeting the child and family’s
needs
3
(13)
20
(87)
1
(2)
4
(8)
8
(17)
35
(73)
9
(17)
45
(83)
How reliable is the Team?
3
(13)
20
(87)
1
(2)
7
(15)
39
(83)
8
(15)
47
(86)
How flexible is the Team?
3
(14)
18
(86)
2
(5)
8
(19)
32
(76)
1
(2)
16
(28)
40
(70)
How satisfied are you with the
service provided by the Team?
1
(4)
22
(96)
1
(2)
4
(8)
6
(12)
38
(78)
2
(3)
8
(14)
48
(83)
3 Comparison between family and external professional groups was significant: U=407; p=.041; r=.24
4 Comparison between family and hospice professional groups was significant: U= 271.5; p=.01; r=.32
5 Comparison across all three groups was significant: H=7.896; p=.019; df=2
57
5.2.4 ACT Parents Service Assessment Tool
Graph 17 Frequency of parent response to overall standards in the ACT
Parent Service Assessment Tool (Items n=64)
50%
16%
26%
8%
Yes No Not Applicable Don't Know
Twenty six completed questionnaires were received. The frequency of responses to
the 64 items is reported in Graph 17. Respondents indicated that they had not
received or were currently not receiving 16% of items, across the six key areas.
58
Graph 18 Frequency of responses by standards in the ACT Parent Service
Assessment Tool
0
10
20
30
40
50
60
70
80
90
100
A Breaking
News
B Discharge
Home
C Assess-
ment
D Care Plan E End of Life F Post Death
ACT Standard
Perc
en
tag
e
Yes No Not Applicable Don't Know
Graph 18 compares responses for each separate standard area. All standards had
negative (‘no’) responses with the exception of the areas related to ‘care after death’
where three quarters of responses were marked as ‘not applicable’. Fewer than 50%
of positive (‘yes’) responses were reported for standards relating to multi-agency
assessment and care planning. Seven respondents completed the post death
standard.
59
Graph 19 Comparison of frequency responses by standards in the ACT
Parent Service Assessment Tool for current data and data obtained in
2009
Comparison of data for the years 2009 and 2012 showed that a greater number of
positive (‘yes’) responses were reported for the ‘breaking news’ and ‘end of life’
standards in 2012. However, respondents described a greater number of ‘not
applicable’ responses in 2012 than in 2009 for the standards concerned with
‘planning for going home’, ‘multi-agency assessment’ and multi-agency care plan’.
Fewer negative (‘no’) responses were recorded for items in the multi-agency care
plan’ standard during 2012 than 2009.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
A 2012 A 2009 B 2012 B 2009 C 2012 C 2009 D 2012 D 2009 E 2012 E 2009
ACT Standard Group and Year
Perc
en
tag
e
Yes No Not Applicable Don't Know
A = Breaking news B = Discharge home C = Assesment D = Care plan E = End of life
60
5.2.5 Qualitative findings from the questionnaire
Three quarters of family and external professional respondents provided written
description regarding elements of the symptom management service they found
helpful with just over half of the sample outlining suggestions for improvement (Table
12).
Hospice professionals (n=32) provided helpful comments and two fifths (n=23)
offered ideas for improvement. All three respondent groups identified similar areas
of helpfulness such as the benefit of 24/7 and out of hours availability, care in any
location and the fact that the team had filled a gap in service provision. Only families
articulated the benefit of the team having time to spend with them, while end of life /
symptom management planning and provision of support for colleagues and families
were common to both professional groups.
A universal response was that they could not think of any suggestions for
improvement. Other suggestions related to improving practical issues with access to
the team via the call handling service and the need for enhanced communication and
liaison. Hospice professionals recommended strategies to increase integration such
as joint working on assessments and development of SMPs. Families suggested that
using simpler language in written care plans would be helpful. A small proportion of
external professionals proposed that 24/7 nursing services in the community should
be core funded by the NHS. Hospice professionals advised expansion of the team to
enhance the ability of a small team to deal with the emotional impact of their work.
Tables 13 and 14 summarise the areas of helpfulness and those for improvement into
10 overarching themes which are supported with a full range of verbatim quotations
from all stakeholder groups.
61
Table 12 Key helpful and improvement themes identified during qualitative analysis
Helpful (%) Improvement
(%)
Key Helpful Themes Key Improvement Themes
Family n=26 20 (77) 16 (61) Glue between professionals
Safety net and life-line
Care anytime
Care in any location
Filling the gap
On stop shop for all round care
Time
Positive personal qualities – calm, sensitive,
understanding, reassuring
Positive team qualities – flexible, committed
Nothing – could not think of any changes needed
Geography and distance to travel
Communication processes with all professionals caring
for child
One clear number, easy to find in emotional confusion
Raise awareness amongst professionals
Simpler language in written plans
External
Professional
n=53
39 (74) 27 (51) Coordination role – synchronised care
End of life and symptom management planning
24/7 OOH availability
Filling a critical gap
Boundary spanning – been a link
support for families and colleagues
Positive personal qualities – caring, approachable,
supportive, helpful
Positive team qualities – responsive, available
Partnership, joint working and liaison
Support for neonates and their families
Nothing – could not think of any changes needed
On call medical advice
Greater visibility
Enhanced team work and better liaison with all
professionals
Clarity of role through enhanced communication
processes
Clear expectations of what can / can’t be expected
NHS core funding for 24/7 palliative care by
community nurses
Joint educational initiatives
62
Table 12 Continued
Helpful (%) Improvement
(%)
Key Helpful Themes Key Improvement Themes
Hospice
Professional
n=60
32 (53) 23 (38) Coordination
Symptom management planning
Positive personal qualities – enabling, supportive,
reassuring, leaders of care
Positive team qualities – responsive, effective
Provider of support, knowledge and expertise
Boundary spanning of professional groups
Enhancing continuity
Enabler of families
Filling a gap – much needed link
Nothing – could not think of any changes needed
Geography and distance from hospice locations
Develop a ‘lead on call’ with others on call more
locally
Enhanced communication processes
Clarity of role
Enhanced integration with hospice care team
Practical difficulties with access via call handling
service
Further expansion in number and skill mix
Ensure ability to deal with emotional impact of role
63
Table 13 Seven key themes illustrating benefit of the team with supporting verbatim quotations
Theme Stakeholder Source ID
The Glue between professionals
“The team have been “the glue” between the professionals, making it easier to talk about really difficult things”. Family 71
Filling the Gap
“We have developed an end of life pathway with the hospice and the Team have been heavily involved. They have supported neonates in the
community that has never happened before”.
External 94
“Filled a critical gap in areas where provision has been extremely patchy”. External 6
“They provide 24/7 care for children & families. Previously this would have been provided in a limited way by the adult community Nursing Team”. External 78
“The team has been very successful in achieving a balance of highly professional conduct yet remaining caring, approachable and responsive. It is a
much valued and appreciated service. The End of life care planning has been particularly helpful”.
External 5
Safety net
“Our baby was diagnosed antenatally with severe heart deformation, he was expected to live for 2-3 days. A nurse visited us on Day 3 to give him
morphine and show us how to syringe-feed him, as well as medicate him ourselves. Although we didn't use the telephone service, we knew we could
call whenever we needed for further support and / or home visits. Our baby died on Day 4”.
Family 52
“When you are in a busy hospital, stressed and panicked about your child's health, never seeing the same doctor and no one is listening to you, it's a
lifeline to know that I can phone the Team and ask for help”.
Family 43
“Providing expert symptom advice and support to both families and professionals. Giving families confidence to care for their child at home. Liaising
with medical / specialist teams”.
Hospice 34
Care anytime
“Regular contact and visits to us at home and constant support as we need it. This was especially true when we had to take our baby to A & E late
one Saturday night. The on-call nurse travelled a great distance to meet us there and had phoned ahead to the hospital and so they were aware of
the situation. She stayed at A & E with us and this was a huge support to us at that stressful time”.
Family 48
“We have just moved to the area. The team came out and was very supportive and understanding helping us to be reassured. There is always
someone for support and advice for our son's needs / care & our family”.
Family 55
“Out of hours meeting a child in A & E with acute problem to support family. Synchronised MDT level write symptom plans”. External 14
“By being available 24/7, I believe families feel supported to keep their child at home at end of life, giving them greater choice”. Hospice 18
“Fantastic to have a service available 24/7. Definitely needed especially where statutory services are less well developed”. Hospice 109
“Symptom management over 24/7. Expertise & advice to hospice professionals in ongoing support & care of family”. Hospice 112
64
Table 13 Continued
One stop shop
“The team has provided my child and our family physical and emotional needs when we needed. However, since my child symptom is improving, this
is certain care that we are not required (i.e. 24/7 around the clock symptom management)”.
Family 91
“In every way that you set out to help. For me it was all the practical stuff. One stop for advice, liaison with others (community Nurses, Hospital)
arranging medications etc. For [child’s] mum it has been the emotional support which is ongoing six months later”.
Family 113
“They have acted as support for our team in advice with symptom management / on call support / and end of life care for our children so that our
team always feels supported within these areas”.
External 57
“Additional support to a family with a child with a life limiting condition - practical nursing and support and advice. Much appreciated by family”. External 89
“Provided on call service prior and during end of life. Supported the children's community nursing team with home visits. Provided symptom
management plan / advice for families”.
External 131
“They have led the care when it has been end of life so it all ran smoothly. They have helped families immensely with symptom management and
pain management & helped them by attending appointments / speaking to consultants”.
External 96
Time
“Never in a hurry to get away or end a telephone conversation. Being someone to talk to, however long it takes”. Family 39
Boundary spanning
“Excellent liaison between hospitals and home when family unable to accept local hospitals help. Support for family. Liaison between GP &
specialists”.
External 16
“Provided excellent 24/7 service. Excellent advice and support given to staff & families. Act as much needed link between professionals, especially in
developing symptom management plans.
Hospice 21
65
Table 14 key themes illustrating areas for improvement with supporting verbatim quotations
Theme Stakeholder Source ID
Building communications
“Better communication from them to service providers”. External 59
“Don't feel they always communicate with nurses at grass roots level about children they are involved in”. Hospice 66
“To make sure consultants and other professionals know who they are and what they do, because not enough people know about them, so they do
not communicate effectively with them. (Hospital, GP etc.) The team does communicate very well”.
Family 84
“Things have improved with better communication but sometimes feels that work of generic CCNs are undervalued and even undermined by the
Team taking over roles that would previously have been undertaken (and still are with families not receiving their input) by the CCN”.
External 89
Developing clarity
“Need to understand their role more and better communication with other professionals involved if they have contact with the family”. External 58
“Clarity of service - what can & can't be expected. Lead clinician should be clearly identified”. External 8
“Would like contact, more frequently especially before involvements with the families. Roles of different teams clearly defined”. External 92
“What I would say is that where perhaps the NHS does fund 24/7 services then the need for charitable funded services reduce. I would always
prefer NHS to fund what should be core services, with the 3rd sector providing add on enhancements”.
External 61
Improving liaison
“More liaison between professionals i.e. CCN teams and acknowledgement of others experience”. External 85
“More integration with hospice team working together - visits, management plans, meetings, assessments etc”. Hospice 28
“On-call medical (Dr) advice maybe” External 83
“To have a single identifiable named contact point for each child”. External 11
66
5.2.6 Team evaluation
5.2.6.1 Team questionnaire responses
There were 14 responses received in total from team members. The tables below
show the frequency and percentage of responses.
Table 15 Frequency of responses in relation to set standards
To what extent do we provide:
Not at
all
To some
extent Mostly
As
much as
is
needed /
wanted
24/7 around the clock symptom management
advice and support (n=14)
1
(7%)
13
(93%)
A specialist level of knowledge and expertise
7
(50%)
7
(50%)
A response to telephone or email queries
within 4 hours
1
(8%)
8
(62%)
4
(30%)
Assessment of the child’s physical symptoms
7
(50%)
7
(50%)
Assessment of the child’s emotional symptoms
2
(14%)
6
(43%)
6
(43%)
Development of an appropriate care /
management plan
7
(50%)
7
(50%)
Care and support for the child wherever
needed (e.g. home, nursery, school, hospice or
hospital)
4
(31%)
9
(69%)
A link between home / hospice / hospital, for
the child and family
6
(43%)
8
(57%)
Direction to other services or professionals as
needed
1
(7%)
4
(29%)
9
(64%)
Advocacy for the child
5
(36%)
9
(64%)
Almost all of the team (93%) responded that they provide 24/7 around the clock
symptom management support as much as is needed or wanted. The only standards
with any responses of ‘to some extent’ were:
A response to telephone or e-mail queries with 4 hours
Direction to other services or professionals as needed
Assessment of the child’s emotional symptoms (n=2 respondents)
67
Table 16 Frequency of responses from the team regarding the usefulness
of the practical elements of the service
How useful do you think the following
are:
Not at
all
useful
Some-
what
useful
Mostly
useful
Very
useful
The Symptom Management Plan
2
(15%)
11
(85%)
The practical care given by us
1
(7%)
13
(93%)
The support and advice given by us
4
(29%)
10
(71%)
The Out of Hours telephone / call handling
service
5
(36%)
9
(64%)
The practical care given by the team had the most ‘very useful’ responses (93%). All
of the elements of the service were thought to be either ‘mostly useful’ or ‘very
useful’. The out of hours telephone service had the lowest frequency of responses of
‘very useful’ (64%).
Table 17 Frequency of responses from the team regarding Team qualities
and overall satisfaction
Not at all Some-
what Mostly Extremely
How responsive are we in meeting the
child and family’s needs?
6
(43%)
8
(57%)
How reliable are we?
2
(14%)
12
(86%)
How flexible are we?
1
(7%)
13
(93%)
How satisfied do you think the families and
other professionals are with the service?
11
(79%)
3
(21%)
How satisfied are you with the service we
provide?
11
(79%)
3
(21%)
The team responses rated the flexibility of the team as the best quality (93%).
Although all of the responses for each of the qualities and satisfaction levels were
either ‘mostly’ or ‘extremely’ only 21% of the team responded ‘extremely’ in relation
to overall satisfaction, this compares to a response rate of 83% from the combined
stakeholder group.
68
5.2.6.2 Qualitative Feedback from the team questionnaires
5.2.6.2.1 How the Team has helped and supported families
Responses indicated that the team had helped and supported families in four main
ways:
Providing a 24/7 service giving families support and reassurance
Empowering families and enabling choice
Developing useful symptom management plans
Being an advocate for the child and helping facilitate multidisciplinary working
Table 18 illustrates each of these areas of help and support.
Table 18 Verbatim quotations illustrating how the team think they have
helped and supported families
Help and Support Quotation
24/7 Support “Fundamentally the service has provided reassurance and reliability – there
is someone there 24/7 who can respond to their needs”
“We have given them both written and telephone and face-to-face support
24/7, to use whenever necessary increasing continuity of care, when
previously they would have had minimal or no support. Most families have
said just knowing they can call, regardless of whether they use the service
out of hours or not, gives them peace of mind that they are not alone.”
Choice of place of
care and end of life
“Helping families have choices for end of life”
“Empowering families and enabling them to care for their child at end of
life.
“Building their confidence by being there in the background”
Symptom
management
“Our experience in symptom management has helped and supported
families to know their child/young person was given the best advice/care.”
“Effective symptom management – much more advanced than other
teams are able to provide.” Advocacy and MDT
working
“We have acted as clinical leads, worked collaboratively and professionally
to ensure care given is evidence or best practice based. We have been key
contacts – often families have so many professionals involved it is important
to have 1 main team to contact and coordinate care for end of life.”
“Ensuring families are not ‘lost’ in the palliative care journey acting as a
guide when appropriate”
“Acting as advocate when they are finding it hard to be heard”
“Providing a MDT approach to patient liaison”
69
5.2.6.2.2 What the team think needs changing over the next year
Qualitative comments from the team highlighted the following areas for
improvement:
Developing working practices in relation to symptom management plans and
advice during office hours to reduce ‘out of hours’ need
Developing expertise
Medical support
Table 19 gives examples of quotes from the team in relation to each of these areas.
Table 19 Verbatim quotations illustrating areas for change over the next
year
Area of Change Quotation
Developing working
practices
“Consider how to develop working practices and on call to address
increased demand over 7 days”
“More emphasis on children living with their condition and providing
symptom management for them.”
Developing
expertise
“Sharing of our own knowledge within the team – for example mini
teaching sessions and updates at meetings.”
“Need to think of ourselves as a specialist team and expert resource not
just to hospice and local areas but nationally.”
“Increase role in education locally and nationally”
Medical Support “In addition to the development of the Managed Clinical Network to
provide better access to medical support 24/7”
“Palliative medical support out of hours for non oncology”
“Structured medical support – needs to develop carefully so as not to
undermine nurse led service”
5.2.7 Feedback from the facilitated evaluation day
5.2.7.1 Measures of success
The five participant groups at the evaluation day (which included hospice managers,
clinical nurse specialists, palliative care nurses and administrators) ranked the
following three key measures of success (with 3 being the highest and 1 the lowest):
70
Participant
Group
Choice of
Place of Care
and Death
Effective
Symptom
Control
Better skilled
and
knowledgeable
staff
A 3 2 1
B 3 2 1
C 3 2 1
D 3 2 1
E 3 2 1
5.2.7.2 Changes going forward
As part of the evaluation day the team identified the following areas for change:
Consistency across EACH
Improving the work
environment
Clarity of roles
Consistency in symptom
management plans
Developing skills
Medical support 24/7
Rebranding the True Colours
Team
5.2.8 Health Economics Data
At the time of writing this report the analysis of data from NHS Norfolk is underway
– the results are expected back at the end of October. Initial inspection shows that
there may be gaps in data however it is highly likely that it will be possible to
compare costs and number of admissions and service users for the two years.
71
6 Discussion
6.1 Context of care
A network approach to the delivery of hands on care closer to home is unusual
(Parker et al, 2011a). During the planning stage it was not clear whether provision of
24/7 symptom management services in the location of family choice (home, hospice,
hospital) using this network approach would be acceptable to professional
stakeholders or improve the clinical outcomes which matter to children and their
families because robust evidence for ‘what works’ in the CPC sector is almost non
existent. Historically, practitioners and commissioners have been reliant on a
combination of policy guidance, expert opinion and descriptive studies, which as
Parker et al’s (2011b) recent systematic review illuminated, have rarely described
service delivery and organisational characteristics making it impossible to extrapolate
best practice guidance for establishing community based services.
Parker et al’s (2011a) assertion that 24 hour, seven day a week care can be provided
effectively through telephone support systems is supported by evidence from the
adult literature (Munday et al, 2002; Kendall and Jeffrey, 2003; King et al, 2003;
Fergus et al, 2010; Taubert and Nelson, 2010; Birks et al, 2011) and Bradford et al’s
(2012) recent study of paediatric oncology services from Australia. However, from
the outset, this service wanted to be able to respond face to face should the need
arise. The rationale for this was based on policy guidance (DH, 2008a), reported
need of families (Craft and Killen, 2007) and evidence from community children’s
services research which has cited qualities such as accessibility, responsiveness,
flexibility and provision of choice amongst factors which ‘work for’ children and their
families (Carter et al, 2009). Provision of ‘face to face’ 24/7 care necessitated the
consideration of a number of critical success factors regarding structure and context
before care could be started safely and effectively.
There were a number of contextual unknowns. The minimum number of children
who might need access to CPC was calculated, however, whilst almost all of these
may need palliative care at some point it was highly unlikely that all would need to do
so at the same time because the methodology for calculating prevalence figures did
72
not distinguish between those children who were receiving active treatment for a
LTC and those in the palliative phase of their illness (Fraser et al, 2011). The number
of families who used the hospice services was also available and the relationship
between the number of children and their level of need for care and support was
understood (Finlay, 2009; Figure 5). However, it was not known how many families
would require additional support with symptom management or who, when care at
any time of the day and night in their chosen location was offered, would opt for
services from the True Colours Team. Seeking support for this hospice and
community based service from colleagues throughout the network to develop a
shared vision, clarity about differing roles, responsibilities and expectations (Martin
and Rogers, 2004) was, therefore, an essential primary task for the team.
Although initiatives to develop a common understanding took place, feedback from a
minority of professional stakeholders identified that better role clarity and enhanced
communication regarding expectations were areas for improvement:
“Clarity of service – what can and can’t be expected.” ID 8 External Professional
“Would like contact more frequently especially before involvements with the
families. Roles of different teams clearly defined.” ID92 External Professional
In addition, creating time to develop communication systems and support structures
to promote inclusiveness and engender shared responsibility, commitment and belief
in giving service for a common purpose (Martin and Rogers, 2004) was also
necessary. Strategies were clearly not effective in all situations even though, as
highlighted previously by Beringer et al (2007) and McEvoy et al (2011), patterns of
interaction and communication along with defining role boundaries are known
factors which facilitate integration. A transformational leadership style and high
degree of emotional intelligence was required to empower key professionals
working in organisations outlined in Table 2. Areas where there were receptive
professional relationships enabled co-location of team members within CCNT offices
and the establishing of honorary contracts for the CNSs. Both these initiatives
facilitated spanning of organisational and geographical boundaries confirming McEvoy
et al’s (2011) assertion that effective liaison was a critical success factor:
73
“Excellent liaison between hospital and home when family unable to accept local
hospital’s help. Support for family, liaison between GP and specialists.” ID 16
External professional
Recruitment of team members with relevant technical, problem solving and
interpersonal skills also contributed to the team’s success. Careful consideration as
to the composition of the team in terms of number, mix and qualities of individuals
was an essential pre-requisite and recruitment successfully applied evidence revealed
by Maynard (2000) which advised drawing on the clinical, biomedical expertise found
in the acute sector with the holistic, child centred and family focussed CCN model
(Table 3). In addition, assessment of interpersonal and team working skills such as
openness, motivation and having an optimistic personal approach was prioritised at
interview. As a result the team built on the strength of their specialist expertise and
were able to satisfy the range of advanced level nursing descriptors defined by the
DH’s (2010b) position statement and illustrated in Figure 5. However, this does not
entirely match with best practice guidance reported by the Royal College of Nursing
(RCN) (2012) that Advanced Nurse Practitioners (ANPs) in primary care operate as
‘generalists’ (p 4) and that such skills will, occasionally, need to be supplemented with
those of specialist health care professionals in primary and secondary care. It is
unclear whether the RCN has suggested that these additional attributes are
possessed by the ANP in primary care or whether collaborative practice draws on
the specialist skills of others. The hospice and community based CNS role in CPC is
evolving and developing with elements of an ANP role and the description in the
Logic Model links both specialist and advanced practice in the community setting.
There was no direct comparison of this role in the children’s sector literature
although ACT and Children’s Hospices UK (2009) described four levels of
competency and four domains of practice for the CPC workforce. Some elements of
the Paediatric Oncology Outreach Nurse role were consistent (Goldman et al, 2006;
Vickers et al, 2007) with the role described in the Logic Model with the obvious
exception of location of service (tertiary versus community based). Both examples
involved descriptors of advanced level practice beyond first level registration (DH,
2010b) which have been used in the Logic Model development to cluster activities of
74
the team identified in Graphs 7-12. Descriptive work from adult cancer care defined
a capability framework for nurses working at specialist and advanced levels (NHS
Education for Scotland and Macmillan Cancer Support, 2008). This usefully
differentiated between competence and capability and outlined 10 essential
capabilities for cancer care which underpinned five key practice domains. This model
is transferrable and should be merged with the ACT and CHUK (2009) work to
advance the development of this community based CNS role for CPC.
As the service progressed the need for a broader skill mix was highlighted to
support the need for caring situations which required additional support in the form
of ‘local on call’. The team profile indicated that two palliative care nurses, funded
through EACH reconfiguration, joined the team in July 2011. The benefits of this
were revealed (Table 4) when these nurses contributed (with Hospice and CCNs) to
local team rosters to provide rapid response for children dying at home. It is
unfortunate that specific activity data were not collected from colleagues across the
network to support these findings and this is a limiting factor. This is identified as an
area for further exploration in the Logic Model.
The holistic and multidimensional context of care for the child and family in the CPC
network was well illustrated by Hain and Jassal (2010). In addition, the strategic
development of specialist palliative care services for adults and children in Wales
(Finlay, 2009) identified the relationship between respite care, specialist palliative
care and the needs and numbers of children requiring both. Figure 5 adapted Finlay’s
(2009) model to fully illustrate the relationships identified throughout the EACH
network and to link them with the professional workforce element. Figure 5
combines five workforce concepts of: generalist versus specialist practitioner (The
Scottish Government, 2008); novice to expert practitioner (Benner, 1984); CPC
workforce competency (ACT and CHUK, 2009); career framework (Skills for
Health, 2010); competence and capability in cancer care (NHS Education for
Scotland and Macmillan Cancer Support, 2008). A key recommendation of this
evaluation is for the team to engage with education providers across the EACH
network to develop a strategy for developing a multi-agency workforce for children
with LTCs and LLCs.
75
Figure 5 Relationship between children, palliative care services and those who care for them
Advanced
specialist
skills
Developing
specialist
skills
Introduction
and
awareness
Foundations
Specialist Palliative Care Services
Palliative Care Services
Dying
Deteriorating
Stable
Unstable
Dying
Deteriorating
Stable
Unstable
Incre
asin
g n
eed
High
level
Low
Level
Incre
asin
g n
eed
High
level
Low
Level
Specialist
Generalist
Expert
NoviceMost
Few
Decre
asin
g n
um
ber
Most
Few
Decre
asin
g n
um
ber
Children Services Workforce
Assistant
Practitioner
Senior
Healthcare
Assistant
Support
Worker
Cadet
Specialist
Practitioner
Practitioner
Consultant
Advanced
Practitioner
76
Most children with life-threatening and LLCs have a low level of need as their clinical
and support needs are met via core general paediatric services within the EACH
network. A smaller number of children become unstable with an increasing level of
need, requiring additional care and support which can usually be managed within
general palliative care services such as those provided by hospices and CCNTs.
Fewer children have periods of instability or deteriorating conditions where
interventions can be intense and prolonged and which may require specialist
palliative care expertise (Figure 5). These findings support those revealed by Brook’s
(2011) Delphi study which defined the spectrum of CPC needs. Contact with, and
input from, a CNS in this service provided the opportunity to both anticipate and
prevent problems across this spectrum although the extent of care provided at end
of life limited the team’s ability to work with children ‘living with’ their condition.
These processes of care are discussed in the following section.
6.2 Process of care
This 24/7 service:
“filled a critical gap in areas where provision has been extremely patchy.” ID6
External Professional.
The literature review and evaluation of care processes focussed on the delivery of
services provided outside normal office hours because that was a key objective. The
main surprising finding from this evaluation, which signalled a paradigm shift in
thinking, was the infrequency of calls received and nursing response needed. During
the 18 month period the on call element of the service was used on 97 of the 548
days available (18% of the time). However, Table 4 demonstrated that when the
service commenced in October 2010 the first two months received calls which
required a high level of nursing input. This impacted on routine daily workload and
had this level of need remained constant there was the potential for this to be
unsustainable. Team discussion and critical reflection identified that focussing on
anticipatory care planning and SMP development could enable and guide families and
professionals with management of their child’s symptoms. It was hypothesised that
although this might not reduce the call volume it might reduce the need for face to
77
face input. This proactive strategy was beneficial in the adult palliative care sector
(King et al, 2003; Brumley et al, 2006) and has consequently been reinforced in this
evaluation. Questionnaire feedback illustrated that of the 108 responses received
regarding the usefulness of the written SMP, 82% of respondents reported this to be
very useful.
It was also noteworthy that evidence from the qualitative findings suggested that the
volume of calls was not related to the extent of need for a 24/7 service. The key
issue for families, and therefore their palliative care providers across the network,
was that the service was perceived as a “lifeline” and that just knowing that it was
available provided support and reassurance.
“Although we didn’t use the telephone service, we knew we could call whenever we
needed for further support and/or home visits.” ID 52 Family
Recent discussion on the End of Life Care Strategy (DH, 2008b; DH, 2011c), led by
the National Council for Palliative Care (NCPC), regarding the reported need for
better coordinated 24/7 care and support has highlighted that carers needs can arise
at anytime and that the language of ‘out of hours’ is entirely provider focussed.
Chapman (2012) eloquently made the point that there are 168 hours in the week
and less that 25% of these fall within conventional Monday to Friday office hours of
09.00 and 17.00. People who are dying and their carers do not keep office hours.
This issue was not revealed in this evaluation but the sentiment is transferrable and a
recommendation from this evaluation is to consider language used and to promote
24/7 services for children which can be accessed at ‘any time of the day or night’
(Chapman, 2012, p721).
“Checking in” with patients by telephone and proactively pre-empting and initiating a
management plan during working hours was also reported by Bradford et al (2012)
as a strategy which contributed to the relatively small number of calls received
overnight by their phone support service. This approach clearly supported the
feasibility of their ‘after-hours’ phone service across Queensland, Australia. This
State, with a population of 4 million is significantly larger than the EACH network in
terms of area (square miles) and people, many of whom also had to contend with a
78
high degree of ‘remoteness’ from tertiary services managing their care. This strategy
of frequent “checking in” with families in the smaller scale EACH network, with
relatively few accessibility problems, was considered potentially disempowering for
parents and could lead to dependence, so daily phone contact was offered but not
initiated by the team unless a family requested it.
The anticipatory planning strategy combined with the formal nature of the on call
element of the service was a critical success factor which ensured that it was
sustainable. Children’s sector research has reported informal, unfunded mechanisms,
delivered on an ad hoc basis (Neilson et al, 2011), and relying on the goodwill of
professionals (Carter et al, 2009; Parker et al, 2011a). When these mechanisms are
coupled with the emotive nature of palliative care work there is the potential for
detrimental consequences on the health and well being of individuals (Beringer et al,
2007). This symptom management palliative care service, however, could not be
sustained by these factors alone. An additional critical success factor was access for
team members to good quality clinical supervision, team and individual management
support. Weekly team meetings served a variety of purposes and nourished
interaction, communication, information exchange, learning and reflection supporting
Martin and Rogers (2004) assertion that initiatives which focus on these human
elements both foster and sustain effective working partnerships and, in addition,
maintain morale and maximise the contribution of staff.
Collecting and reporting on accurate information about caseload demographics and
service provision is a key strategic goal for CPC services (DH, 2008a) to better
understand the needs of the population and influence outcomes based
commissioning (Parker et al, 2011a; DH, 2011b; Fraser et al, 2011). Although
children on the caseload were evenly spread across the age range the increase in
infants aged < 1 year between the two time points was likely due to the
development of the neonatal palliative care pathway across the EACH network. This
assumption is further supported by the number of deaths recorded in this age range
(n=17, 33%).
79
“We have developed an end of life pathway with the Hospice and the Team have
been heavily involved. They have supported neonates in the community that has
never happened before.” ID 94 External Professional
Unfortunately, it was not possible to compare these figures with the Durham
University and Together for Short Lives (TfSL) (2012) national service mapping of
hospice provision because age bandings differed.
Contributing to the care of children with cancer via an oncology palliative care
pathway was reflected in the number of children with LTCs for which curative
treatment may be feasible but can fail (ACT group 1) and the number was
significantly higher than reported by other hospice services in 2011/12 (Durham
University and TfSL, 2012). A limiting factor of this evaluation was the use of ACT
categories to describe diagnostic groups which prevented further comparison with
afore mentioned national hospice data and with NHS data collected as Hospital
Episode Statistics.
Data regarding the number of interventions and time taken to deliver these were
collected to build a picture of the nursing dependency of the caseload. Although
twice as many children received more than 10 interventions in April 2011 than in
March 2012 a similar number of children in both time periods received more than 10
hours of nursing interventions. This indicated that recording the amount of time
spent undertaking nursing interventions and including time travelling was an integral
component of the calculation of dependency along with recording the number of
interventions delivered. Combining time taken with the calculation of median
interventions can contribute to caseload capacity and thus influence performance
management of the team. Recording travel time was essential due to the extended
catchment area across the EACH network (>5000 square miles) and although
individual CNSs were aligned to a base hospice with a caseload in that area the 24/7
nature of the service meant that extended travel could be required at any time. Data
collection did not differentiate between travel time and distance for the different
working periods during the day and night and was another limiting factor.
80
Daily nursing activity was recorded and categorised in seven areas defined by key
elements of the CNS role. Each of these seven areas was further divided. It was not
surprising, given the nature of the service, that symptom assessment and review of
SMPs occurred median 36 (range 13 to 52) and 24.5 (range 7 to 55) times per month
respectively (Graph 8). However, comparison of median figures for the role
categories revealed that contact with professionals, liaison with parents and care
coordination were the most frequently cited activities. It is proposed that these
interventions facilitated the expert parent role although further research is required
to confirm this. Skilbeck and Payne (2005 p330) declared that these types of
interventions happen ‘behind the scenes’ and this evaluation affirms this. In addition,
it supports Tuffrey et al’s (2007) work which concluded that the nature of the CCN
role providing EoLC was often hidden. Furthermore, the delivery of children’s
palliative nurse-led care in this EACH network has added weight to the assumption
made by Skilbeck and Payne (2005) that specialist palliative care delivered in this way
challenges the tertiary cancer model and biomedical power. However, a primary
benefit of the cancer model is the 24/7 access to medical consultant-led advice which
is missing for children with other diagnoses requiring palliative care and
acknowledged by one respondent as an area for improvement:
“On-call medical (Dr) advice maybe”. ID 83 External professional
A key recommendation from this evaluation is to ensure that the team contributes
to the development of a managed clinical network of consultant paediatricians with
special interest in CPC who can provide advice and support to the CNSs. Primarily
with anticipatory planning during ‘office hours’ but also at any time of the day and
night.
During the course of the project 51 children and their families were supported at
end of life. It is interesting to note that the greatest proportion of deaths were
children with LTCs (ACT Group 1) which was likely due to core hospice
involvement in care pathways for cancer and neonatal palliative care. It is
disappointing that the Durham University and TfSL (2012) mapping of services only
outlined the total number of deaths (n=701) occurring in children’s hospice services
in 2011-12 and therefore limiting comparison with this evaluation. Nursing activity
81
was also recorded for post death care and revealed the importance of critical
reflection of care with attendance at debrief sessions accounting for 29% of the total
episodes recorded for care of the child and family after death.
Data regarding location of death, however, were comparable with national hospice
data revealing that more children were supported to die at home in this network
(n=28, 58%) than reported by the national picture (33%). It can be concluded that
delivering a 24/7 service using this Logic Model of care delivery enabled choice of
location of care for families.
6.3 Outcomes of care
A total response rate of 47% (n=139) was achieved for the stakeholder feedback
questionnaire although this fell short of an acceptable minimum rate of 75% limiting
the generalisability of findings (Cook et al, 2009). However, individual responses
from family (54%) and hospice professionals (50%) achieved that which is typical for
postal questionnaires (Polit and Beck, 2012). Analysis of combined responses
demonstrated that most stakeholders perceived the True Colours Team to provide
as much care and support as needed or wanted with the 10 items related to team
standards. It was pleasing to note that the large majority (88%) of respondents felt
that the team provided as much 24/7 around the clock symptom management advice
and support as needed. Ten percent of respondents felt that assessment of a child’s
emotional symptoms were met to some extent only and this likely reflected the
focus given to physical symptoms in written management plans. Several standards
were reported as ‘mostly’ provided for by a proportion of respondents (e.g. 31%
response to queries within four hours and 27% response for provision of specialist
knowledge and expertise). This feedback has usefully guided areas for improvement
and is noted in the Logic Model.
These items correlated well with the four categories of calls reported by Bradford et
al (2012): communication, practical issues, symptom management and emotional
support. This adds weight to the composition of the core content of this symptom
management service and has reinforced the benefit of an holistic approach, although
a greater focus on assessment of a child’s emotional symptoms must be
82
recommended. Comparison with Bradford’s (2012) classification has also illustrated
that the questionnaire did not seek information on how well the emotional support
needs of parents and care givers were met by the team despite recent evidence by
Spiers et al (2011) that parents received support through developing relationships
with community practitioners. This was a limitation in design and should be rectified
in subsequent service evaluations.
Team qualities such as responsiveness, flexibility and reliability were reported in the
literature as attributes which are valued by families (Carter et al, 2009) and
recommended by policy and practice guidance (DH, 2008a; ACT, 2009a). The
evaluation sought to confirm or refute the benefit of these qualities when delivering
a service in this way. Quantitative findings revealed that all three stakeholder groups
rated these extremely highly and this is further supported by the following verbatim
quotations:
“Regular contact and visits to us at home and constant support as we need it. This
was especially true when we had to take our baby to A & E late one Saturday night.
The on-call nurse travelled a great distance to meet us there and had phoned
ahead to the hospital and so they were aware of the situation. She stayed at A & E
with us and this was a huge support to us at that stressful time”. ID 48 Family
“The team has been very successful in achieving a balance of highly professional
conduct yet remaining caring, approachable and responsive. It is a much valued and
appreciated service. The end of life care planning has been particularly helpful”. ID
5 External Professional
It is argued that this is a rather superficial view, although apposite for the method of
evaluation used, but does not extend knowledge or develop deeper understanding of
the meaning of these qualities as they relate to 24/7 CPC services. This is, therefore,
another limiting factor of this evaluation. Further research, using appropriate
qualitative methodology such as phenomenological theory, is recommended in the
Logic Model.
83
A high level of satisfaction with the overall services of the True Colours Team was
reported. Although there were only three items which were rated significantly
differently by the stakeholder groups, observation of Tables 10 and 11 revealed that
a larger proportion of families rated elements more highly than either group of
professionals. External professionals scored more items using the ‘met to some
extent’ rating for the team standards and the ‘Somewhat’ rating for usefulness of
practical elements and in assessment of team qualities. Qualitative comments
provided insight into reasons, such as:
“Things have improved with better communication but sometimes feels that work of
generic CCNs are undervalued and even undermined by the Team taking over roles
that would previously have been undertaken (and still are with families not receiving
their input) by the CCN”. ID 89 External professional
“More liaison between professionals i.e. CCN teams and acknowledgement of
others experience”. ID 85 External Professional
Although the majority of professionals in the network and in the hospice services
welcomed this service development a degree of professional preciousness and gate
keeping (Sharkey et al, 2010) was experienced by the team when engaging with some
organisations. One respondent extended the view that 24/7 services should be core
funded by the NHS:
“What I would say is that where perhaps the NHS does fund 24/7 services then
the need for charitable funded services reduce. I would always prefer NHS to fund
what should be core services, with the 3rd sector providing add on enhancements”.
ID 61 External professional
Professional roles were not well described in the CPC literature but evidence from
inter-professional team working literature in health and social care can be used to
discuss this phenomenon (Stewart et al, 2003;Martin and Rogers, 2004; Morin et al,
2008; Lovegrove and Goh, 2009; Lester et al, 2008; McEvoy et al, 2011). Barriers to
effective inter-professional team working have been reported as: lack of ability to
communicate a clear vision (Northouse, 2010), lack of respect for professional
84
diversity (Frost and Robinson, 2007) and reduced opportunity for co-location
(Hickey, 2008). Strategies which aid integration of new teams have been described
such as the introduction of joint protocols and documentation (Frost and Robinson,
2007; Hickey, 2008). Two projects were initiated by the True Colours Team which
related to key aspects of the symptom management role; a booklet for the
management of subcutaneous medicines delivered by syringe driver in the home or
hospice which could be used by all nursing teams and a standard operating
procedure for administration of buccal diamorphine for the management of pain.
Both initiatives required the establishment and leading of a joint working party by the
team. These groups achieved much needed practical tasks for the safe care of
children and also enabled individuals to meet and work together on a common
development initiative. It is proposed that these initiatives aided the improvement of
relationships and it is recommended that such strategies should continue.
The ACT Parent Service Assessment Tool was designed to seek feedback from
parents regarding their perception and experiences of local services in relation to
the six key pathway standards. All family respondents completed the questionnaire
although one third of possible responses were reported as either ‘not applicable’ or
‘don’t know’. Possible reasons for this are discussed in the next section. Parents
answered ‘yes’ to half of the questions (50%) and ‘no’ to less than one fifth of
questions (16%). These overall figures are better than those obtained by Beringer
(2009) in a scoping exercise performed in South West England (yes n=40%; no
n=22%). It was encouraging to note that more than 50% of respondents reported
‘yes’ to items in the ‘breaking news’, ‘discharge home’, ‘end of life’ and ‘post death’
standards but concerning to note the frequency of ‘no’ responses in all standards
except that for post death care. Beringer’s (2009) study also noted a high proportion
of ‘no’ responses in all standards. This information has provided specific areas with
which to target future interventions.
Comparison with data obtained by Maynard (2009), prior to the start of the 24/7
service, using identical methodology but not the same cohort of families was
disconcerting. It revealed that standards relating to ‘discharge home’, multi-agency
assessment’ and ‘multi-agency care planning’ were provided less well than in 2009
85
indicated by a reduction in the frequency of ‘yes’ responses. It was possible that the
team had influenced the provision of service at the beginning and end of a child’s
illness trajectory but had not been effective on standards which reflected the ‘living
with’ stage of a child’s illness. This assertion is supported when reviewing the extent
of EoLC reported in the daily diary nursing activity. However, statistical analysis,
should it have been undertaken, might have revealed no significant differences when
‘don’t know’ and ‘not applicable’ responses were taken into account. This addition to
the strategy of data analysis would have enhanced this discussion point.
6.4 Logic Model
The purpose of this nursing Logic Model was to provide a graphical representation of
the progress of this new service (Taylor-Powell and Henert, 2008). The aim was to
demonstrate relationships between investments and results. Investments were
associated with the context, processes and activities of care. Results related to
critical success factors, areas for improvement in relation to standards, context and
processes of care, and areas for further development and research. These were
classified as outcomes because they extended knowledge and understanding about
key aspects of the delivery of 24/7 care in this network. These are not outcomes or
‘benefits of care’ as experienced by the child or family in the Donabedian sense
(Donabedian, 1985), but they are essential factors necessary for an effective service
which were revealed through synthesis of the findings from the different elements of
this evaluation. It is argued that these factors must be in place for the 24/7 service to
function successfully.
A number of contextual and care processes were essential considerations prior to
commencing the service and these are recorded as inputs in the Logic Model. The
most important elements were to establish mechanisms across the network for
sharing and communicating the vision for the service and agreeing a care strategy
which could be translated into logical operating procedures. Being clear about the
specifics of what care would be provided, how, when and where care would be
provided enabled practical issues such as travel, mobile and lone working to be
formalised and influenced how the service was co-ordinated and communicated. A
purposive recruitment strategy which brought together a team greater than the sum
86
of its parts, ensured that the right level of skills, knowledge, competence and
capability was available for families.
In depth analysis of nursing activities demonstrated that key elements of advanced
level practice (DH, 2010b) were evident. These primarily focussed on direct clinical
practice and leadership and collaborative practice and are recorded as outputs.
Receptive relationships with colleagues throughout the network enabled co-location
of team members with CCNTs and further facilitated the boundary spanning
approach. A minority of activity was categorised as developing self and others and
improving quality and developing practice which might be areas to strengthen in the
future. Professional participants were those who had benefited from the services of
the team. The high level of satisfaction of these stakeholders was reported as an
output but it was also relevant to note areas for improvement such as the need to
focus on assessment of a child’s emotional symptoms alongside their physical needs,
and to put systems in place to ensure that the four hours response time to queries
was also met. The key area from the audit of ACT standards was the need for the
team to focus on children ‘living with’ their condition as these standards were least
well met.
Critical factors for the successful implementation and delivery of the service were
identified throughout the discussion and have been reported in the outcomes section
of the Logic Model. These increased knowledge and understanding about the delivery
of 24/7 care in the network and are outcomes of the evaluation. Anticipatory care
planning and symptom management plan development were key initiatives which
supported the proactive approach to care. These influenced the ‘paradigm shift’ in
thinking as having these mechanisms and structures in place avoided the need for
crisis management and seven day work rostering. This provided assurance that the
24/7 service delivered in the way described was sustainable. Obtaining and managing
epidemiological and demographic data, such as collecting specific data regarding on
call activity, were areas where additional or different processes were necessary to
support the service and are recommended for effective service management. Areas
for research and development were also highlighted throughout the discussion and
these should contribute to the development of the regional CPC strategy.
87
Figure 6 Nursing Logic Model for a network approach to the delivery of 24/7 children’s palliative care
Outputs Outcomes Inputs
Nursing Activities Participation Increased understanding and
knowledge Research and Development
Context of Care
Establishing mechanisms for sharing vision and goals
Communication and information strategy
Care strategy
Recruitment strategy o Depth and breadth
of experience
Geography and location of staff
Travel
Lone working
Mobile working
Handling calls any time of the day and night
Process of Care
Clear operating procedures and standards set for all aspects of service
What care is provided?
How will care be provided?
Who will provide care?
When will care be provided?
Where will care be provided?
How will care be co-ordinated and communicated?
Clinical Practice
Autonomous practitioner
Patient advocate
Anticipatory planning
Symptom assessment o When, how, who?
Clinical debrief of cases and practice
Team time for reflection on role and responsibilities
Leadership and Collaborative Practice
Supervision and support
Transformational style
Emotional intelligence
Time for reflection on roles and responsibilities
Formal 24/7 service
Clinical leader
Co-location of Team members in CCNT offices
Honorary contracts with partner organisations
Collaborator
Developing Self and Others
Formal clinical supervision
Teaching and liaison
Academic study Improving Quality and Developing Practice
Collection of activity and service data to support service development
Service Users
Children and Young People
Siblings
Parents
Care givers
External Professionals
Health o Primary o Secondary o Tertiary
Education
Social care
Voluntary sector
Hospice Professionals
Nursing o Care team
Therapists
Family support practitioners
Managers Expressed satisfaction and usefulness Areas for Improvement
Focus on ‘living with’ stage of child’s condition
Team standards: 4 hour response time
Specialist knowledge
Assessment of emotional symptoms
Critical Success Factors
Recruitment of staff with advanced technical, problem solving, motivation and interpersonal skills
Formalised and funded on call procedures
Anticipatory care planning with Monday to Friday working
Development and presence of Symptom Management Plans in lay language
Boundary spanning and co-location
High quality clinical supervision for Team
Context and Process of Care
Regular audit to identify when standards not being reached
Clarity of diagnostic classification
Use of mapping software to identify family locations across the network
Collect specific data regarding on call activity
Categorise reasons for calls (e.g. using Bradford et al’s (2012) taxonomy)
Record need for medical input outside normal office hours
Areas for Development
Link the five key workforce issues: generalist & specialist; novice to expert; competency; capability; career framework
Link with education providers to develop a workforce education strategy
Provide the nursing support for the Managed Medical Clinical Network
Areas for Research
How does the presence of a written symptom management plan impact on the need for nursing help outside of office hours?
What is the relationship between local and network on call?
What is the meaning of a responsive, flexible, reliable service from the family perspective?
How does professional liaison, education and co-ordination enable the expert parent role?
Assumptions External Factors
Right level of specialist and advanced skills and knowledge in the Team o Clinical biomedical; holistic, family focused; child centered; interpersonal; team working;
motivation; ability to read and respond to complex situations
Right leadership and support for the Team
External and Hospice colleagues share and support the vision
Inter-professional team working to promote boundary spanning
Knowledge of geographical area & travel time across the network
Economic: funding on call and highly specialised Team
Epidemiological: how many and which groups of children and families need access to the service across the network?
88
7 Conclusions and recommendations
7.1 Conclusions
Nursing care and support anytime of the day and night for children with palliative
care needs can be delivered effectively using a network approach and is valued by
families and professionals. This novel service, delivered by a team of five clinical
nurse specialists, ‘filled a critical gap’ in provision, was ‘a lifeline’ for families and one
which professionals felt ‘enabled family choices in place of care’ to be realised.
Review of the literature focussed on delivery of and access to care across the full
24/7 period and was derived primarily from the adult sector because there were few
reports in the children’s service literature which described this element of care.
Several opportunities for learning from the adult literature were identified. Although
there were clear distinctions between children and adults at the micro level of the
patient in terms of biomedical needs and treatment, issues which related to service
delivery in the adult sector resonated with those experienced in children’s
community services models. Providers of services to children and families are
advised to make better use of the evidence described in the adult literature such as
“dying out of hours” (NCPC and Macmillan Cancer Support, 2011).
The most striking lesson learned was the realisation that current use of terminology
such as ‘out of hours care’ in children’s palliative care services is entirely provider
focussed. Children and their families have needs which arise at anytime and therefore
require services to be available ‘at any time of the day or night’ (Chapman, 2012 p721).
This sentiment was not raised in this evaluation, although parents did, however,
report feelings of reassurance and support which access to this new service provided
to them.
There was a paucity of robust research identified relating to measurement of the
impact of multifaceted interventions such as CPC. Critical reflection recognised that,
for children’s services, this was an area fraught with difficulty in terms of
heterogeneity of the population, illness pathways, family systems theory, complexity
of interventions and the multidimensional nature of organisations and professionals
in the network which provided care (Wolfe and Siden, 2012). The clinical academic
89
and children’s research community is poised to rise to this challenge. The hospice
community is well placed to contribute and the expansion of academic partnerships
will result in the building of both evidence and knowledge for CPC, raise hospices’
profile and reputation and maximise the potential of services for children and
families. Hospices and other providers must be prepared to translate this knowledge
into practice, which may require working in different ways with reconfiguration of
services and teams.
The overall design of this project enabled successful audit and evaluation of the five
objectives and therefore achieved its purpose. Audit of best practice standards in the
network by families who had experienced or were using services which delivered
palliative care, showed that the impact of services on standards relating to the
middle phase of a child’s illness journey were less well met than those at the
beginning or end of a child’s journey. This is a key area for the team and other
service providers to focus their attention in the future. The audit of team standards,
set at inception of the service, demonstrated that the new service was highly valued
by families and professionals and both quantitative and qualitative data revealed
evidence of good practice and areas for improvement, thus satisfying objectives 2, 3
and 4 of the evaluation.
Identification of components of a 24/7 service model (Objective 5) were revealed in
the nursing Logic Model (Taylor-Powell and Henert, 2008) and based on the
integration of findings related to analysis of the context of care, processes of care
and the outcome of service delivery and care. The model identified essential
principles which needed to be in place prior to starting the service in relation to
vision, care strategy, communication processes and recruitment, as well as practical
issues such as the development of standard operating procedures to determine what,
how, when and where care would be provided. Key assumptions and external
influencing factors were also outlined which impacted on service development.
Nursing activities were categorised according to advanced level nursing practice
indicators (DH, 2010b) and professional participants were identified according to
their agency or sector and service users were those who had benefited from the
services of the team. The high level of satisfaction of these stakeholders was
recognised as an output and areas for improvement such as the need to focus on
90
assessment of a child’s emotional symptoms alongside their physical needs were also
revealed.
A series of critical success factors were illuminated which increased knowledge and
understanding about the delivery of 24/7 care in the network and are thus
considered as outcomes of the evaluation. These are replicated from the Logic
Model below:
Recruitment of staff with advanced technical, problem solving, motivation and
interpersonal skills
Formalised and funded ‘on call’ procedures
Anticipatory care planning with Monday to Friday working
Development of symptom management plans in lay language
Boundary spanning and co-location
High quality clinical supervision for Team members.
In addition, the nursing Logic Model development has helped to focus attention on
specific areas which are needed for improvement and identified areas for research
and development which should be incorporated into the palliative care strategy
across the network.
7.2 Recommendations
The following recommendations are made:
Establishment of formal network structures which are unconstrained by
organisational and professional boundaries and which can provide the nursing
support to the upcoming medical managed clinical network
Link with the three major education providers in the network to develop a
multi-agency workforce strategy to support the CPC strategy. This should
combine the five concepts of generalist and specialist practice; novice to
expert practice; competency and core CPC domains, capability and provide a
motivational career framework
Build capacity and capability in research for the CPC sector and in particular
encourage children’s hospices to develop academic partnerships to design
91
and implement research which measures the impact and effectiveness of
interventions and particularly those which use a network approach to care
delivery.
A number of specific questions arose as a consequence of this evaluation and should
form the basis for future research:
How does the presence of a written symptom management plan impact on
the need for nursing help outside of office hours?
What is the relationship between local and network on call structures,
procedures and outcomes for families?
What is the meaning of a responsive, flexible, reliable service from the family
perspective?
How does the professional liaison, education and co-ordination role of the
CNS enable the expert parent role?
This evaluation has revealed the successful implementation of a hands on, specialist
palliative care, nurse-led service for children with palliative care needs and their
families by a team of clinical nurse specialists who: “have been the glue between the
professionals, making it easier to talk about really difficult things”.
92
8. Dissemination and publication plan
On completion of the project the following presentations are planned:
EACH Care Team’s in Norfolk, Suffolk and Cambridgeshire
EACH Care Management Team
EACH Trustee Board
County palliative care network strategic groups in Norfolk, Suffolk and
Cambridgeshire
Practitioner Operational Group of the East Anglia Managed Clinical Network
Specialist Practitioner Interest Group Norfolk
Relevant national and international conferences such as Together for Short
Lives; Help the Hospices, Palliative Care Congress.
Journal articles for publication are in preparation:
1) Development of 24/7 specialist children’s palliative care: a role for children’s
hospices? (a position paper)
2) Evaluation of an innovative network approach to 24/7 care and support for
children with palliative care needs (service evaluation)
3) Development of a Nursing Logic Model for 24/7 children’s palliative care
services (academic nursing)
4) What do parents and carers of children with palliative care needs want from
24/7 palliative care services? (popular nursing press)
5) Evaluating children’s palliative care services: contributing to the evidence-base
(methods paper)
93
References
Association for Children’s Palliative Care (ACT) (2004) A framework for the
development of Integrated Multi-Agency Care Pathways for children with life-threatening and
life-limiting conditions. Bristol: ACT.
Association for Children’s Palliative Care (ACT) (2007) Transition Care
Pathway. Bristol, ACT.
Association for Children’s Palliative Care (ACT) (2009a) A guide to the
development of children’s palliative care services. 3rd ed. Bristol: ACT.
Association for Children’s Palliative Care (ACT) and Children’s Hospices
UK (2009) Right People, right place, right time. Bristol: ACT.
Benner, P. (1984) From Novice to Expert: Excellence and power in clinical nursing
practice. California: Addison-Wesley Publishing Company, Inc
Beringer, A. (2009) The Service Improvement Network Project (SINP):A facilitated
programme to support the development of ACT integrated children’s palliative care pathway.
Project Report. Bristol: The Centre for Child and Adolescent Health.
Beringer, A. J.; Eaton, N. M., and G.L. Jones (2007) Providing a children’s
palliative care service in the community through fixed-term grants: the staff
perspective, Child: Care, Health and Development, 33 (5), pp. 619-624.
Birks, T.; Krikos, D.; McGowan, C. and Stone, P. (2011) Is there a need for
weekend face-to-face inpatient assessments by hospital specialist palliative care
services? Evaluation of an out-of-hours service, Palliative Medicine, 25 (3), pp. 278-283.
Bradford, N.; Irving, H.; Smith, A. C.; Perdersen, L. A., and Herbert, A.
(2012) Palliative care afterhours: a review of a phone support service, Journal of
Pediatric Oncology Nursing, 29 (3), pp. 141-50.
94
Brook, L. (2011) Identifying children who may have palliative care needs: a spectrum
of Children’s Palliative Care. [Online] Available from:
http://www.lancs.ac.uk/shm/research/ioelc/groups/media/lbrook_201011.pdf
[Accessed 23 August 2012]
Brumley, D.; Fisher, J.; Robinson, R. and Ashby, M. (2006) Improving Access to
Clinical Information in After Hours Community Palliative Care, Australian Journal of
Advanced Nursing, 24 (1), pp. 27-32.
Burns, N. and Grove, S. (1997) The practice of nursing research. Conduct, critique and
utilization (3rd Edition). Philadelphia: WB Saunders Company.
Carter, B.; Coad, J.; Goodenough, T.; Anderson, C., and Bray, L. (2009)
Community children’s nursing in England: An appreciative review of CCNs in England.
Chapman, S. (2012) At any time of day and night? British Journal of Neuroscience
Nursing, 7 (6), pp. 721.
Cook, J.; Dickinson, H. O. and Eccles, M. P. (2009) Response rates in postal
surveys of healthcare professionals between 1996 and 2005: An observational study.
BMC Health Services Research, 9 (160)
Craft, A. and Killen, S. (2007) Palliative care services for children and young people in
England: an independent review. [Online]. Available from:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndG
uidance/DH_074459 [Accessed 23 August 2012].
Department of Health (2008a) Better Care, Better Lives: Improving outcomes and
experiences for children, young people and their families living with life-limiting and life-
threatening conditions. London: The stationary Office. [Online]. Available from:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents
/digitalasset/dh_083108.pdf [Accessed 23 August 2012].
Department of Health (2008b) End of life care strategy. Promoting high quality care
for all adults at the end of life. London: Department of Health.
95
Department of Health (2010a) Equity and excellence :liberating the NHS [Online].
Available from:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/
DH_117353 [Accessed 27 June 2012].
Department of Health (2010b) Advanced level nursing position statement. London:
Department of Health CNO Directorate.
Department of Health (2011a) The Operating Framework for the NHS in England
2012/13. Department of Health. [Online] available from:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset
/dh_131428.pdf [Accessed 27 June 2012].
Department of Health (2011b) The NHS Outcomes framework. Department of
Health. [Online]. Available from:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset
/dh_131723.pdf [Accessed on 27 June 2012].
Department of Health (2011c) End of life care strategy third annual report. London:
Department of Health. [Online]. Available from:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset
/dh_130570.pdf [Accessed 23 August 2012]
Durham University and Together for Short Lives (2012) Count me in: children’s
hospice service provision 2011/12. Durham: Durham University School of Applied Social
Sciences.
Fergus, C. J. Y.; Chinn, D. J. and Murray, S. A. ( 2010) Assessing and improving
out-of-hours palliative care in a deprived community: a rapid appraisal study, Palliative
Finlay, I. G. (2009) Developing a template to plan palliative care services: the Welsh
experience, Journal of Pain and Symptom Management. 38 (1), pp. 81-86.
96
Fraser, L. K.; Miller, M.; Aldridge, J.; McKinney, P.A.; Parslow, R.C. and
Hain, R. (2011) Life-limiting and life-threatening conditions in children and young people in
the United Kingdom; national and regional prevalence in relation to socioeconomic status and
ethnicity. Final report for Together for Short Lives. Leeds: University of Leeds.
Frost, N. and Robinson, M. (2007) Joining up children’s services: safeguarding
children in multi-disciplinary teams, Child Abuse Review, 16, pp.184-199.
Goldman, A.; Hewitt, M.; Collins, G. S.; Childs, M.; Hain, R. and for the
United Kingdom Children’s Cancer Study Group/Paediatric Oncology
Nurses’ (2006) Symptoms in children/young people with progressive malignant
disease: United Kingdom Children’s Cancer study Group/Paediatric Oncology Nurses
Forum Survey, Pediatrics, 117, pp.1179-1186.
Hain, R.; Heckford, E. and McCulloch, R. (2012) Paediatric palliative medicine in
the UK: past, present and future, Archives of Disease in Childhood, 97, pp. 381-384.
Hain, R.D.W. and Jassal, S.S. (2010) Paediatric palliative medicine. Oxford: Oxford
University Press.
Hickey, J. (2008) Integrating health and social care service, Nursing Management, 15
(8), pp. 20-24.
Hynson, J. L.; Aroni, R.; Bauld, C. and Sawyer, S. M. (2006) Research with
bereaved parents: a question of how not why, Palliative Medicine, 20, pp. 805-811.
Kendall, C. and Jeffrey, D. (2003) Out-of-hours specialist palliative care provision
in an oncology centre: is it worthwhile? Palliative Medicine, 17, pp. 461-464.
King, N.; Thomas, K. and Bell, D. (2003) An out-of-hours protocol for
community palliative care: practitioners’ perspectives, International Journal of Palliative
Care, 9 (7), pp.277-282.
97
Lester, H.; Birchwood, M.; Tail, L.; Shah, S.; England, E. and Smith, J. (2008)
Barriers and facilitators to partnership working between early intervention services
and the voluntary and community sector, Health and Social Care in the Community, 16
(5), pp. 493-500.
Liben, S.; Papadatou, D. and Wolfe, J. (2008) Paediatric palliative care:
challenges and emerging ideas. Lancet, 371, pp. 852–64.
Lovegrove, M. and Goh, T. (2009) Leadership for the allied health professions, in:
Bishop, V. (ed). Leadership for Nursing and Allied Health Care Professions. Maidenhead:
Open University Press.
Martin, V. and Rogers, A. (2004) Leading inter-professional teams in health and social
care. New York: Routledge.
Maynard, L. (2000) An exploratory study of the needs of children with life-threatening
illnesses and their families and the potential role of community children’s nursing. Ph.D
thesis, London: University of London, King’s College London.
Maynard, L. (2009) Children’s Palliative Care Commissioning and Service Provision in NHS
Cambridgeshire Report. Cambridge: NHS Cambridgeshire.
McEvoy, P.; Escott, D.; Bee, P. (2011) Case management for high-intensity service
users: towards a relational approach to care co-ordination, Health and Social Care in
the Community, 19 (1), pp. 60-69.
Morin, D.; Saint-Laurent, L.; Bresse, M-P,; Fillion, L. and Dallaire, C. (2008)
Modes of participation in the implementation of an integrated network, Journal of
Hospice and Palliative Nursing, 10 (5), pp. 313-324.
Munday, D.; Dale, J. and Barnett, M. (2002) Out-of-hours palliative care in the
UK: perspectives from general practice and specialist services, Journal of the Royal
Society of Medicine, 95, pp. 28-30..
98
Neilson, S. J.; Kai, J.; MacArthur, C. and Greenfield, S. M. (2011) Caring for
children dying from cancer at home: a qualitative study of the experience of primary
care practitioners, Family Practice, 28, pp. 545-553.
NHS Education for Scotland and Macmillan Cancer Support (2008) Working
with individuals with cancer, their families and carers. Professional development framework
for nurses specialist and advanced level. Edinburgh: NHS Education for Scotland.
Northouse, P. (2010) Leadership: Theory and Practice. (5th Edition). Thousand Oaks,
California: Sage Publications.
Office of National Statistics (2011) Mid-2010 Population Estimates: Quinary age
groups for local authorities in the United Kingdom; estimated resident population.[Online].
Available from: www.ons.gov.uk
Parker, G.; Spiers, G.; Gridley, K.; Atkin, K.; Cusworth, L.; Mukherjee, S.;
Birks, Y.; Lowson, K.; Wright, D.; and Light, K. (2011a) Evaluating models of
care closer to home for children and young people who are ill. Final Report. London: NIHR
Service Delivery and Organisation Programme.
Parker, G.; Spiers, G.; Gridley, K.; Atkin, K.; Birks, Y.; Lowson, K.; and
Light, K. (2011b) Evaluating models of care closer to home for children and young people
who are ill. A systematic review.. London: NIHR Service Delivery and Organisation
Programme.
Polit, D. and Beck, C. (2012) Nursing Research: Generating and assessing evidence for
nursing practice. 9th Edition. Philadelphia: Wolters Kluwer Health/ Lippincott Williams
and Wilkins.
Sharkey, K.; Savulescu, J.; Aranda, S. and Schofield, P. (2010) Clinician gate-
keeping in clinical research is not ethically defensible: an analysis, Journal of Medical
Ethics, 36, pp. 363-366.
Skilbeck, J. K. and Payne, S. (2005) End of life care: a discursive analysis of
specialist palliative care nursing, Journal of Advanced Nursing, 51 (4), pp. 325-334.
99
Skills for Health (2010) Key elements of the career framework.. Skills for Health.
Spiers, G.; Parker, G.; Gridley, K., and Atkin, K. (2011) The psychosocial
experience of parents receiving care closer to home for their ill child, Health and Social
Care in the Community, 19 (6), pp. 653-660.
Stewart, A.; Petch, A. and Curtice, L. (2003) Moving towards integrated
working in health and social care in Scotland: from maze to matrix, Journal of
Interprofessional Care, 17 (4), 335-350.
Taubert, M. and Nelson, A. (2010) “Oh God, not a Palliative”: out-of-hours
general practitioners within the domain of palliative care, Palliative Medicine, 24 (5), pp.
501-509.
Taylor-Powell, E. and Henert, E. (2008) Developing a logic model: Teaching and
training guide. Madison: University of Wisconsin.
The Scottish Government (2008) Supporting the development of advanced nursing. A
toolkit approach. CNO Directorate, Scottish Government.
Tuffrey, C.; Finlay, F. and Lewis, M. (2007) The needs of children and their
families at end of life: an analysis of community nursing practice, International Journal of
Palliative nursing, 13 (1), pp. 64-71.
Vickers, D. (2008) EACH Symptom Control Project. Cambridge: Cambridgeshire PCT.
Vickers, J.; Thompson, A.; Collins, G. S.; Childs, M. and Hain, R. (2007) Place
and Provision of Palliative Care for Children With Progressive Cancer: A Study by the
Paediatric Oncology Nurses’ Forum / United Kingdom Children’s Cancer Study Group
Palliative Care Working Group, Journal of Clinical Oncology, 25 (28), pp. 4472-4476.
Wolfe, J. and Siden, H. (2012) Research in paediatric palliative care, in: Goldman,
K., Hain, R., and Liben, S. (eds). Palliative Care for Children. 2nd Edition.. Oxford: Oxford
University Press.
100
Zimmermann, C.; Riechelmann, R.; Krzyzanowska, M.; Rodin, G.; and
Tannock, I. (2008) Effectiveness of specialized palliative care – a systematic review,
Journal of the American Medical Association. April, 299(14), pp. 1698-1709.
101
Appendix 1: Questionnaire
EACH / True Colours Symptom Management Team Evaluation
EACH is evaluating an innovative service approach to the provision
of 24/7 care and support in children's palliative care.
We would like to find out about your experiences of this service to highlight areas of good
practice but more importantly, to identify where we can make improvements to help other
families in the future.
Please answer the following questions by ticking the relevant box
To what extent does the True
Colours Symptom Management
Team provide:
Not at all
To
some
extent Mostly
As much
as we
needed
/
wanted
Don’t know
24/7 around the clock symptom
management advice and support
A specialist level of knowledge and
expertise
A response to all your telephone or email
queries within 4 hours
Assessment of your child’s physical
symptoms
Assessment of your child’s emotional
symptoms
Development of an appropriate care /
management plan
Care and support for your child wherever
needed (e.g. home, nursery, school,
hospice or hospital)
A link between home / hospice / hospital,
you and other professionals
Direction to other services or
professionals as needed
Advocacy for you and your child
How useful have you found:
Not at
all
useful
Some-
what
useful
Mostly
useful
Very
useful
Don’t
know
The Symptom Management Plan written
by your lead Consultant or the Team
The practical care given by the Team
The support and advice given by the Team
The Out of Hours telephone / call
handling service
Please turn over
102
Please tick the relevant box which best describes your view
Responsiveness Not at
all
Some-
what Mostly Extremely
Don’t
Know
How responsive is the True Colours
Symptom Management Team in
meeting your child and family’s needs?
Reliability Not at
all
Some-
what Mostly Extremely
Don’t
know
How reliable is the True Colours
Symptom Management Team?
Flexibility Not at
all
Some-
what Mostly Extremely
Don’t
know
How flexible is the True Colours
Symptom Management Team?
Overall Satisfaction Not at
all
Some-
what Mostly Extremely
Don’t
know
How satisfied are you with the service
provided by the True Colours
Symptom Management Team?
How has the EACH / True Colours Symptom Management Team helped and supported your
family?
Please describe
What would you change about the service provided by the True Colours Symptom
Management Team?
Please describe
Thank you for completing this questionnaire – please return it with the ACT Service Assessment Tool to
Carolyn Leese, Head of Education and Quality in the FREEPOST envelope provided.
103
Appendix 2: ACT Survey
ACT Integrated Palliative Care Pathways Standards:
Parent Service Assessment Tool 24/7 Symptom Management Team Evaluation This tool is being used as part of The EACH / True Colours Symptom Management Team Evaluation to find out about services provided for children, young people and their families in Cambridgeshire, Essex, Norfolk, Peterborough and Suffolk. It provides a process for considering the experiences of families in relation to current practice and services received. We hope to identify good practice and areas of practice which need further development. As a parent you may find services mentioned have not been offered, but would be helpful. If this is the case please discuss with a member of the True Colours Symptom Management Team.
The Goals and Standards listed below correlate to those in ACT’s Integrated Multi-Agency Care Pathway.
For more information contact ACT on 0117 922 1566 or visit the ACT website at www.act.org.uk
Goal
Goal & Standards
Were these goals & standards achieved?
Breaking
News
Every family should receive the disclosure of their child’s prognosis in a face-
to-face discussion in privacy & should be treated with respect, honesty &
sensitivity. Information should be provided both for the child & family in
language that they can understand
Yes No Not
applicable
Don’t
know Comments
A1 Was your child's diagnosis shared with you during face to face discussion?
A2 Was the news shared with you in a private setting?
A3 Was the news given to you with a relative/friend to support?
A4 Was useful written material provided to you?
A5 Was an interpreter offered, if you needed one?
A6 Was appropriate information available for your child/ren?
104
Goal
Goal & Standards
Were these goals & standards achieved?
Discharge
home
Every child & family diagnosed in the hospital setting, should have an agreed
transfer plan involving the hospital, community services & the family, &
should be provided with the resources they require before leaving hospital.
Yes No Not
applicable
Don’t
know Comments
B1 Did/Do you have a key worker?
B2 Was your GP informed?
B3 Were community services informed e.g. health visitor; community nurse?
B4 Was a community children’s nursing service available?
B6 Were you involved in your child's discharge plan?
B6 Was your child's discharge planned early?
B7 Were home visits arranged pre discharge?
B8 Was shared medical care between the lead centre and your local service planned?
B9 Did you receive the equipment you needed to care for your child?
B10 Were your transport needs addressed?
B11 Were you/carers trained before transfer?
B12 Were clear communication lines agreed with you?
B13 Were you provided with a 24 hr contact number?
B14 Was a Keyworker identified before discharge home?
Assessment
Every family should receive a multi-agency assessment of their needs ASAP
after diagnosis or recognition, and should have their needs reviewed at
appropriate intervals
Yes No Not
applicable
Don’t
know Comments
C1 Were your child & family's needs assessed ASAP following diagnosis?
C2 Were assessments coordinated across services?
C3 Were you fully involved in assessments?
C4 Was your Child kept central to and included in the process?
C5 Did the assessment include all of your family?
C6 Did the assessment recognise and respect your child's individuality?
C7 Were your transport needs considered?
C8 Was information gathered and recorded systematically?
C9 Was non-jargon language used?
C10 Did the process address confidentiality and consent?
C11 Were you given a copy of the assessment information?
C12 Was the key worker's role clear to you?
105
Goal
Goal & Standards
Were these goals & standards achieved?
Care Plan
Every child & family should have a multi-agency care plan agreed with them
for the delivery of co-ordinated care & support to meet their individual
needs. A keyworker to assist with this should be identified and agreed with
the family.
Yes No Not
applicable
Don’t
know Comments
D1 Has a Keyworker been identified?
D2 Is the Care Plan available to you and you child?
D3 Does the Care Plan include the whole family?
D4 Is Symptom Management, Nursing Care & Personal Care planned for?
D5 Is psychological care available for your whole family?
D6 Is benefits advice/financial information given to you?
D7 Are flexible short breaks available for your child?
D8 Is social care and support available?
D9 Are there opportunities for play/social activities?
D10 Is your child's education fully supported?
D11 Does the Care Plan address your health issues?
D12 Has a Community Children’s Nurse been allocated to your child?
D13 Are aids/equipment available for home and school?
D14 Does the Care Plan address transition to adult services?
D15 Are there regular updated reviews of care?
D16 Are you able to request reviews of care?
End of Life
Every child & family should be helped to decide on an end of life plan and
should be provided with care & support to achieve this as closely as possible
Yes No Not
applicable
Don’t
know Comments
E1 Do you have an End of Life Plan?
E2 Are your professionals open & honest in discussing the end of life?
E3 Are resuscitation plans agreed, written up & communicated appropriately?
E4 Do you have access to 24hr symptom control?
E5 Are symptom control staff suitably qualified & experienced?
E6 Is emotional/spiritual support available?
E7 Are your choices able to be supported with resources?
E8 Have you and your child & family been given a choice in the place of care?
Thank you for completing the assessment this far. The questions on the next page relate to goals and standards for bereaved families and
will not be applicable to all.
106
- 1 -
The following questions relate to care and services provided for bereaved families and will therefore not be applicable to all. If you have experienced the
death of your child, and feel able to complete this section, we would be very grateful for your comments. However, we understand that it may be too
painful to comment on your experience and you may prefer to leave this section blank.
Goal
Standards
Were these goals & standards achieved?
After Death
Yes No Not
applicable
Don’t
know
F1 Were you and your family given time & privacy with your child after death?
F2 Were you in control & supported in making choices?
F3 Was practical advice & written information available?
F4 Were the needs of your other children & grandparents considered?
F5 Was fully informed consent given for post mortem examinations?
F6 Were professional contacts informed about the death of your child?
F7 Was bereavement support available for as long as needed?
F8 Were your other children's bereavement needs supported?
Comments
Thank you.
ACT is the only organisation working across the UK to achieve a better quality of life and care for every life-limited child and their family. ACT, Orchard House, Orchard Lane, Bristol BS1 5DT. Telephone: 0117 922 1556 Fax: 0117 930 4707 Email: [email protected]
Registered Charity No: 1075541 Company Registration No 3734710
ACT Integrated Palliative Care Pathways Standards: Parent Service assessment Tool, © ACT (Association for Children’s Palliative Care), August 2007.
107
Appendix 3: Prepared Script
Introduction guide
EACH – True Colours Symptom Management Team Evaluation
General personal introduction……………….I am ringing/ speaking to you on behalf of EACH
Your family received a service from the True Colours Symptom Management Team in…..give date if
possible… we are currently evaluating the effectiveness of this service and would like to hear your
views about the service you received.
The Symptom Management Team was developed to provide a 24/7 Service for children with life
threatening conditions and / or complex health care needs in October 2010.
Having used the True Colours Team Service and other palliative care services - the True Colours
Trust and EACH would like to find out about your experiences of these services:
1) To recognise areas of good practice
2) To identify any problems or gaps where we can make improvements in order to help
other families in the future.
If you are willing to take part in this evaluation please could you complete the two questionnaires
that will be sent to you by post and return them to Carolyn Leese Head of Education and Quality at
EACH in the prepaid, addressed envelope provided.
Please be assured:
1) That any information you give will be anonymised and kept confidential.
2) That you or your family will not be identified in any way
3) Anything that you do say will not affect your child’s care or the support you are receiving
now or in the future.
If you would like any help completing the questionnaires or would like to talk to someone in detail
about the service you have received I can ask my colleague Janet Leeson to make contact with you.
Or you can contact her directly yourself on telephone: 01223 815138 or email
Janet is an Occupational Therapist and she has been employed by EACH to help undertake the
evaluation of the TCT service – any conversation you have with her will be confidential. However,
should you tell her anything that may mean someone could be at risk she will have to tell someone in
authority about it in accordance with EACH policy.
Thankyou – EACH and True Colours Trust will be pleased to receive your feedback
108
Appendix 4: Verbal and Written Consent
EACH / True Colours Symptom Management Team
Evaluation – Family Consent Form
The Evaluation Team:
Christine Blackwell, Project Administrator 01223 815138
Carolyn Leese, Head of Education and Quality 01473 237244
Janet Leeson, Care Development Manager and Evaluation Assistant 01223 815138
Linda Maynard, Lead Nurse and Principal Evaluator 01223 815107
I understand that:
1. Participation in this evaluation is entirely voluntary and I can withdraw at any point.
2. If I feel that any questions being asked are too sensitive and I would prefer not to answer
them, I need not.
3. Notes will be taken of my interview.
4. Information about me and my family will be used for the purposes of this evaluation only.
5. All information about me and my family will be treated as strictly confidential and handled in
accordance with the provisions of the Data Protection Act 1998. 6. If I should tell you anything that may mean someone could be at risk you will have to tell
someone in authority about it in accordance with EACH policy and procedures.
7. When the report is written it will not name me or my family, and no one will be able to
identify me or my family from what has been written.
8. The evaluation findings will be used to inform local and national care service developments.
9. If I choose not to take part in the evaluation the service I receive now or in the future will
not be affected.
I confirm that I have read the information sheet on this evaluation in which I have been
asked to participate and have been given a copy to keep. I have had the opportunity to
discuss the details and ask questions and I understand the purpose of this evaluation.
I consent to take part in the evaluation of the EACH / True Colours Symptom
Management Team
Yes No
Name of child/young person: ………………………………………………...
Name of parent/guardian: ……………………………………………………
Parent/guardian signature: ……………………………………………… Date: …………………..
I confirm that I have read through this form with the participant via the telephone and
have obtained their verbal consent to participate in this evaluation.
Name of Interviewer: ………………………………………………...
Signature of Interviewer : …………………………………………… Date:………………….
Please give this form to Janet Leeson, Evaluation Assistant.
Thank you.