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Supporting Children with Life-Limiting Conditions and their Families – Research Examining Service Provision in Yorkshire and the Humber A report of research carried out by J N Research on behalf of Martin House Children’s Hospice 2013
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Supporting Children with Life-Limiting Conditions
and their Families – Research Examining
Service Provision in Yorkshire and the Humber
A report of research carried out by J N Research
on behalf of Martin House Children’s Hospice
2013
J N Research is an independent research organisation specialising in health and social policy
research. It develops ideas, conducts high quality and ethically driven research employing a range of
methodologies, and provides bespoke research training to organisations across the public, private
and third sectors.
© J N Research 2013
First published 2013 by J N Research
All rights reserved. Reproduction of this report by photocopying or electronic means for non-
commercial purposes is permitted. Otherwise, no part of this report may be reproduced, adapted,
stored in a retrieval system or transmitted by any means, electronic, mechanical, photocopying, or
otherwise without the prior written permission of J N Research.
About this Report This document contains a report of research carried out by J N Research on behalf of Martin House
Children’s Hospice. The original research design was developed by Sheila O’Leary and Aase
Somerscale of Martin House Children’s Hospice, and follows on from a Service Evaluation of Martin
House Children’s Hospice Provision completed in 2011.
CONTENTS
EXECUTIVE SUMMARY
Background ............................................................................................. 6
Project Aims ............................................................................................ 6
Project Methods...................................................................................... 7
Key Findings............................................................................................ 7
Implications for Practice....................................................................... 10
1 Background – A Summary of the Literature..........................................12
1.1 Children with Life-Limiting Illnesses ...........................................12
1.2 Supporting Families ....................................................................13
1.3 Paediatric Palliative Care ............................................................14
2 The Project ............................................................................................18
2.1 Project Aims ................................................................................18
2.2 Project Methods .........................................................................18
2.3 Phase One – Understanding Paediatric Palliative Care ..............19
2.3.1 Key informant interviews...............................................19
2.3.2 Focus group with young people.....................................19
2.3.3 Project advisory panel....................................................20
2.3.4 Narrative literature review ............................................20
2.4 Phase Two – Mapping Regional Provision .................................20
2.4.1 Service mapping exercise...............................................21
2.4.2 Survey of service provision ............................................21
2.4.3 Audit of Martin House referrals .....................................22
2.5 Exploring Families’ Needs for Support........................................22
2.5.1 Family and staff interviews ............................................23
2.5.2 Analysis of interview and focus group data ...................25
2.6 Research Ethics and Governance................................................25
3 Project Findings – Paediatric Palliative Care Provision .........................27
3.1 Setting Parameters for Service Mapping ....................................27
3.2 Service Provision for Families in the Region ...............................30
3.3 Reflections on Mapping and Contacting Services......................35
3.4 Survey of Service Providers.........................................................37
3.5 Survey Results .............................................................................37
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3.6 Making Use of the Mapping and Survey Data ............................45
3.7 Key Summary Points ...................................................................45
4 Project Findings – Views of Parents and Professionals.........................47
4.1 Introduction ................................................................................47
4.2 The Key Role of Specialist Paediatric Palliative Care ..................47
4.3 The Importance of a Sustainable Home Life...............................48
4.4 Building and Maintaining a Seamless Package of Care...............50
4.5 Assessing and Responding to Need ............................................53
4.6 Co-ordinating Care ......................................................................55
4.7 The Key Role of Information .......................................................56
4.8 Transition to Adult Services ........................................................57
4.9 Barriers to Equity and Access.....................................................57
5 Project Findings – Views of Young People ............................................60
5.1 Introduction ................................................................................60
5.2 Identifying Provision ...................................................................60
5.2.1 Paid carers......................................................................60
5.2.2 Social and leisure activities ............................................61
5.2.3 Children’s hospice and short break provision................61
5.3 Barriers to Access........................................................................62
5.3.1 Benefits, funding and cost .............................................62
5.3.2 Transport arrangements ................................................63
5.3.3 Availability and access...................................................63
5.4 Comparing the Accounts of Young People and Parents .............64
6 Summary of Key Findings ......................................................................66
7 Improving Paediatric Palliative Care
– Recommendations for Martin House................................................. 70
7.1 Increase Provision of Specialist Medical and Nursing Care ........71
7.2 Provide Paediatric Palliative Care Training .................................72
7.3 Improve Care Co-ordination for Families...................................72
7.4 Raise Awareness and Understanding of Paediatric
Palliative Care ............................................................................. 73
8 REFERENCES ..........................................................................................75
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9 APPENDICES ..........................................................................................79
TABLES AND FIGURES
TABLES
Table 1 Project Phases and Methods .................................................18
Table 2 Service Types for Mapping and Survey..................................27
Table 3 Geographical Categories for Service Mapping ......................29
Table 4 Main Types of Services ..........................................................35
Table 5 Survey Respondent Details ....................................................40
Table 6 Main Sources of Funding .......................................................41
Table 7 Details of Equivalent Adult Services ......................................42
Table 8 End of Life Care Provision ......................................................43
Table 9 Details of Bereavement Support ...........................................43
Table 10 Details of Main Service Types ................................................ 44
Table 11 Main Components of Care for Children and Families ........... 52
Table 12 Barriers to Accessing Paediatric Palliative Care..................... 58
Table 13 Sources of Information about Service Provision ................... 64
FIGURES
Figure 1 Three-tiered System of Paediatric Palliative Care .................28
Figure 2 Map of Yorkshire and Humber by Local Authority Area .......29
Figure 3 Proportion of National and Regional Services.......................30
Figure 4 Number of National and Regional Services by Local
Authority Area ....................................................................... 31
Figure 5 Proportion of Regional Services by Local Authority Area......32
Figure 6 All Services by Organisational Status.....................................33
Figure 7 National Services by Organisational Status ...........................33
Figure 8 Regional Services by Organisation Status..............................34
Figure 9 Breakdown of Participants by National and Regional ...........38
Figure 10 Breakdown of Participants by Organisational Status ............ 38
Figure 11 Breakdown of Regional Participants Local Authority Area.....39
Figure 12 Breakdown of Regional Participants by Status...................... 39
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A Case Study of Paediatric Palliative Care in Yorkshire and the Humber
Research funded by Martin House Children’s Hospice – 2011 to 2013
EXECUTIVE SUMMARY
BACKGROUND
‘Life-limiting conditions’ is an umbrella term used to “describe diseases with no reasonable hope of
cure that will ultimately be fatal“, (Fraser et al., 2011). It has recently been estimated that there are
49,000 children and young people (aged 0 to 19 years) living with a life-limiting condition in the UK
(Fraser et al., 2011). All children diagnosed with a life-limiting condition will share the prognosis of a
shortened life-expectancy. However, some children will live for only a few weeks or months whereas
others will live for years and even decades (Hain et al., 2011). Due to the wide spectrum of diseases, children will follow their own distinctive illness trajectory.
Children will often require life-long medication, and may need to have invasive medical procedures
to help control symptoms, relieve pain, and slow disease progression (Hain et al., 2011). Some
children will also require the assistance of medical devices to compensate for the failure of an organ
or bodily function. Although children will spend time at hospital during their life and may have
complex health care needs, the majority of children and young people will live at home, cared for in
the main by their parents (Hunt et al., 2013). Consequently, the care and additional support that children with life-limiting conditions and their
families might need is significant and wide ranging. Paediatric palliative care services aim to enhance
a child’s quality of life, adopting a holistic approach to care and providing support for the whole
family (ACT, 2011). Paediatric palliative care is provided by a range of organisations across the
public, private and voluntary sectors, and support will often begin at the stage of diagnosis and
continue through death and bereavement. In recent years, paediatric palliative care has developed
as a sub-speciality in medicine (Hain et al., 2011). There has also been an increasing interest among
policy makers to develop services that better meet the care needs of seriously ill children and their
families (NHS, 2013). Despite this, research continues to show that many families have unmet needs and experience
extreme pressure points during their child’s life and beyond, sometimes with little support from
others (Craft and Killen, 2007; Hunt et al., 2013). Because of the range of organisations involved and
the changing nature of care needs over a child’s lifespan, the job of co-ordinating care often falls to
parents (Hunt et al., 2013). However, existing studies show that parents find it difficult to navigate
the system to identify what help is available and from where, and are sometimes subject to poor
assessments of need and limited support from the professionals whose job it is to co-ordinate care
for them (Noyes et al., 2013).
PROJECT AIMS
This research aims to further our understanding of the barriers to and facilitators for providing
effective and appropriate palliative care and support to children and their families. Taking
Yorkshire and the Humber as the focus of study, the research collected information about the range
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Table 1: Project Phases and Methods
of services available to children and young people with life-limiting conditions and their families
living in the region. The research also explored the views of paediatric palliative care staff and
families about the care and support available, and the strategies and resources families draw upon
in order to access the support they need. This research aims to provide a better understanding of regional provision, therefore enabling
organisations involved in supporting children with life-limiting conditions to work together in
ensuring provision is accessible and equitable, and to develop services not currently available. The
research examines the implications for paediatric palliative care practice, and considers the future
for Martin House, as a key provider in the Yorkshire and Humber region. The implications for
practice and recommendations are drawn from the findings of this research, the recent service
evaluation of Martin House, and the wider paediatric palliative care literature and published studies.
PROJECT METHODS
The project involved three overlapping phases – understanding paediatric palliative care; mapping
regional provision; and exploring families’ needs for support. The methods used within each of the
three phases are summarised in Table 1, which also provides information about the number of
participants in each phase. In total, 28 parents, 12 young people, 53 paediatric palliative care experts
and frontline staff, and 181 service providers took part in the research.
KEY FINDINGS
1. Identifying services in the region was an arduous and time-consuming task. The internet was a
useful resource, but locating services required input from paediatric palliative care and other
frontline staff; service directories; organisations involved in sign-posting and providing information;
and families themselves. Staff, parents and young people also found the process of identifying
what support is available as an on-going challenge and a key barrier to securing care and support
that is needed.
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Phase One
Understanding Paediatric Palliative Care
Phase Two
Mapping Regional Provision
Phase 3
Exploring Families’ Needs for Support
Interviews with 25 key informants involved in paediatric palliative care
Focus group with 8 young people to discuss project and identify provision
Consultation with project advisory group (n=13) and academic consultant
Narrative review of paediatric palliative care literature
Mapping of service providers
(388 organisations identified)
Survey of organisations identified (274 agreed to take part, 181 returned questionnaire)
Analysis of survey data to examine service types, locations, funding, referral routes, access & availability
Examination of sample of referrals to Martin House (n=32) to examine referral process and referral routes
In-depth interviews with 24 parents and 4 young people (number of families = 24, including 4 bereaved)
Semi-structured interviews with 19 frontline staff (2 GPs, 6 paediatricians, 7 nurses, 4 social workers)
Transcription and thematic qualitative analysis of interview data
Secondary analysis of young person’s focus group and key informant interview notes
2. The study confirms that a significant proportion of services are provided by voluntary sector
organisations, offering a wide variety of services. Some organisations served a very small local area,
and finding out about them required the knowledge of families and professionals who had become
aware of them. However, many of the charities were national, supporting different groups of
children and families across the UK, and having a significant online presence. However, families and
staff were not always aware of the support available from national charities, despite them being
identified as a key resource for some parents and young people. 3. The survey identified a range of barriers to accessing services. These included, differing referral
criteria (e.g., age, condition, medical needs); short opening hours; limited transport and translation
arrangements; service charges; difficulties supporting children with complex care needs; and waiting
lists. Families and staff also identified differing referral criteria between service providers as a key
barrier to securing support. The short-term funding and continuous changes in both the statutory
and voluntary sector were identified as additional barriers to effective paediatric palliative care. 4. The lack of a shared language across the range of organisations involved in supporting families,
and misunderstandings and differences in opinion about the terms ‘life-limiting’ and ‘palliative
care’ meant that in practice, there were uncertainties about which children should be supported
by whom, and at what stage in their life. Families of children without a diagnosis and those with
complex healthcare needs that were difficult to define as ‘life-limiting’ were reported to receive less
care and support due to the restrictive referral criteria of some services. 5. There was a distinct lack of support available to families during evenings and weekends, with
many services operating during normal office hours. This included some children’s community and
specialist nursing services, which were identified by families as a key provider of care. Families and
staff identified the difficulties of accessing specialist medical and nursing care on evenings and
weekends as a barrier to effectively supporting children. Acknowledging the dearth in provision,
some families drew attention to the importance of continuing care provision, and the invaluable
advice and emergency care available from their children’s hospice. 6. Specialist end of life and bereavement care is only provided by a small minority of services
identified in the research. Children’s hospices were identified as the primary provider of end of life
care and bereavement support in the region. Bereaved parents taking part described the support
provided by their children’s hospice at the end of life as invaluable. Some staff expressed concerns
that families without access to a children’s hospice at the end of life may not have the ‘good
death’ that a children’s hospice is reported to help provide.
7. Families each had their own unique package of care and support, provided mainly by public and
voluntary sector organisations. The arrangements in place for paid carers tended to vary, with some
families using Local Authority provision; others using a private or voluntary care agency; and some
using their local contacts to identify potential carers who were already known to the child or who
were recommended to them. The financial resources available to families was also an important
factor in securing support, with some families having to rely entirely on the hours provided as part
of their care package, and others using their own money to pay for additional support. 8. Families and staff reported significant variations in the care and support offered to different
families, even among those whose child had the same condition and similar needs. The factors
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identified to contribute to this included: differences in local provision; variation in needs assessment
processes; assumptions made by professionals about the needs of different types of families;
parents not being able to recognise or accept that they need help; parents’ reservations about
accessing certain services, e.g., children’s hospices; assumptions made by parents about the role of
social workers, e.g. focus on child protection. Staff and parents also observed variation between
families with and without access to a children’s hospice or special school, both of which were
identified as key providers of care. 9. Parents and young people identified the importance of being able to access flexible and high
quality personal and nursing care, both in the home and in other settings. Continuity of care was
also important, as it was reported to help carers and families establish a trusted relationship.
However, in reality the quality and continuity of care that children received was variable with many
families sharing their experiences of both poor and excellent care. Consequently, the process of
finding carers and service providers who supported both the child and family, and who could work
flexibly around family routines was identified as a challenge, with many parents expressing anxieties
about losing the valued support provided by a carer, nurse, respite provider, or children’s hospice. 10. Many parents interviewed reported that the package of care they had in place was just right,
providing them with the resources and energy they needed to effectively care for their child, be a
parent to their children, and live a ‘normal’ family life. Other parents identified unmet needs but
explained that they had sufficient support in place for their family to function on a daily basis.
However, a few parents were at ‘breaking point’ and became very distressed as they described the
limited support they received from others, and expressed uncertainty about who to ask for help. In
fact, nearly all parents described having been in crisis at varying points in their child’s life. Securing
appropriate care and support was sometimes the only means by which families were able to
recover from this. 11. Parents need a break from daily life and from providing around the clock care for their child.
Respite at home and away from home was equally important. For families who accessed a
children’s hospice, the planned stays were an essential part of their care package, providing parents
with time to rest and recoup while their children engaged in fun activities that they sometimes
missed out on at home. Young people also viewed stays at a children’s hospice and other short
break providers as important, because it enabled them to live more independently, adopt their
own daily routine, and spend time with other young people. 12. Families and staff identified the needs assessment carried out by a social worker as both a
barrier and facilitator to securing support. While some parents identified their social worker as an
important resource and gatekeeper to care, other parents were less positive, describing instead the
constant battles with their local authority in order to secure increased hours of care, or funding for
adaptations and equipment. Many families felt that their social worker lacked experience of
supporting children with life-limiting conditions and had little understanding of paediatric
palliative care. Social workers confirmed that this was sometimes the case, and expressed a desire
to learn more about how to effectively support families. 13. Families have different needs for support depending on their own circumstances and
environment, as well as their child’s condition and associated symptoms. For parents, being in paid
employment; having extended family support and other children; being able to drive; household
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income; housing tenure; adequacy of space and access at home; their own physical and emotional
well-being; and the relationship with their spouse or partner, were all identified to influence the
type and amount of support required. Needs were also reported to shift over time as
circumstances changed or when there were significant events for a family, such as a divorce,
pregnancy, or for parents the loss of their own parents. 14. For parents, information was identified as one of the key resources they draw upon to help
them cope with their child’s diagnosis; to learn more about how to effectively care for their child;
and to access the support they need. Professionals and organisations that were able to quickly
signpost families to other services when a problem occurred, or when a new need became apparent,
were highly valued. However, many families and staff identified this as a gap in provision that
needed to be addressed, and identified a need for better information about all aspects of caring for
a child with a life-limiting condition, and about the support that is available and how to access it. 15. The transition to adult services was identified as a time during which young people and
parents could lose vital care and support. The lack of equivalent adult services, the different funding
and transport arrangements, and the limited knowledge in adult health and social care about
childhood life-limiting conditions, were identified as barriers to effectively supporting young adults.
The limited opportunities for young people to engage in social and leisure activities was identified
by staff, parents and young people as a key concern, with some young adults spending the majority
of time at home once leaving school or college. 16. Obtaining the right package of support is crucial in helping families function and lead ‘normal’
lives. For some parents this took many years of hard work and persistence, whereas other parents
described it as more of a lottery. From analysing families’ accounts, the involvement of one service
or professional who acted as a co-ordinator of care for families was the single most important
factor that helped to secure the care and support children and their families required. This was
sometimes a child’s paediatrician, community nurse or social worker, but it could also be an allied
healthcare professional, a child’s special school, a service manager, or a children’s hospice. An
effective co-ordinator of care also helped to predict future needs a family might have, thereby
preventing families reaching breaking point and enabling parents to effectively care for their child
and family.
IMPLICATIONS FOR PRACTICE
Specialist paediatric palliative care providers, which include children’s hospices and specialist
clinicians and nursing teams, are highly valued by families and other service providers, offering a
total approach to care from diagnosis through end of life, and specialist medical and nursing care.
These services must be made available to a greater number of children with life-limiting conditions
and their families. A wide range of public, private and voluntary sector organisations are involved in supporting families
in daily life. However, there continues to be too much variation in the type, amount, and quality of
care available. Better signposting and information about what is available; more consistent referral
criteria across organisations; and access to high quality training for staff working with families is
required to ensure that provision is distributed more equitably and to improve the standards of
care.
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Limited understanding and mixed opinions about paediatric palliative care can sometimes prevent
families accessing key services. Working across organisational barriers to raise awareness of
paediatric palliative care and establish a shared language that encompasses the wider range of
organisations involved in supporting families could help to ensure that more families receive the
right combination of specialist and generic support. An effective co-ordinator of care who has experience of working with children who have a life-
limiting condition and can support families over time as their needs change, is an essential
component of the care families need. However, there is little formal provision for this role across
the region, and many parents have no single professional with responsibility for their overall care.
Establishing a regional centre of paediatric palliative care co-ordinators who can build
relationships with families and work across organisational boundaries could help to ensure that
more families are effectively supported in the future.
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1 BACKGROUND – A SUMMARY OF THE LITERATURE
1.1 Children with Life-Limiting Illnesses
‘Life-limiting conditions’ is an umbrella term used to “describe diseases with no reasonable hope of
cure that will ultimately be fatal“, (Fraser et al., 2011). There are over 300 conditions that are
described as life-threatening or life-limiting, which fall into four broad groups of conditions
developed to categorise children and young people and to describe their illness trajectory (Together
for Short Lives, 2013). Not all children and young people who are known to have a life-limiting
condition will receive an official diagnosis, either because their condition is so rare or because the
complexity of their symptoms makes it difficult to do so (Together for Short Lives, 2013). It has
recently been estimated that there are 49,000 children and young people (aged 0 to 19 years)
currently living with a life-limiting condition in the UK (Fraser et al., 2011). This figure is much higher
than previous estimates, which put the number at around 20,000 (Cochrane et al., 2007). It is also
suggested that around 50% of childhood deaths are among children with life-limiting and life-
threatening conditions (Cochrane et al., 2007; Hain et al., 2010).
Children and young people diagnosed with a life-limiting condition will share the prognosis of a
shortened life-expectancy. However, some children will only live for a few weeks or months whereas
others will live for years and even decades (Hain et al., 2011). Due to the wide spectrum of
diseases, children will follow their own distinctive illness trajectory. As well as varying because of the
underlying condition or presence of co-morbidities, the illness trajectory can also be different for
children with the same disease, as seen in recent studies looking at survival rates for children with
Duchenne muscular dystrophy (Pegoraro et al., 2010; Kimura et al., 2013). Children will often require
life-long medication, and may need to have invasive medical procedures and other interventions to
help control symptoms, relieve pain, and slow disease progression (Hain et al., 2011). Some children
and young people will also require the assistance of medical devices to compensate for the loss or
partial failure of an organ or bodily function (Heaton et al., 2005).
Most children diagnosed with a life-limiting condition will spend time in hospital during their life
(Together for Short Lives, 2013). This will tend to happen around the time of diagnosis; at various
points during a child’s life when there are significant health events or progression; and at the end of
life when a more specialist palliative care approach may be required (Together for Short Lives, 2013).
In the past, many children and young people would have spent long periods of time in hospital due
to the complexity of their care needs (Noyes, 2000). However, the development of a range of
portable medical devices to support children at home (Heaton et al., 2005), greater knowledge
about the long-term management of childhood life-limiting conditions (Guglieri and Bushby, 2011),
and a shift towards home and community-based care for children with complex healthcare needs
(Kirk, 1999), has meant that children are now primarily cared for at home by their parents, and
spend most of their lives outside of the hospital setting (Hunt et al., 2013).
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Consequently, parents are increasingly taking responsibility for the management of their child’s
condition and providing many elements of care previously carried out by trained medical
professionals (Glendinning and Kirk, 2000). Kirk (1999) highlights “the social, emotional and financial
impact on families of providing intensive and complex nursing care for their child” (p.392), with
social isolation, sleep deprivation, and feelings of stress and anxiety not uncommon (Family Fund,
2013). For children whose condition is life-limiting, parents also have to accept that their child’s life
will be changed forever and may well end before their own. Parents cope with this in different ways
and to varying degrees (Aldridge, 2007). Some parents will continue to seek for a cure and push for
aggressive treatments throughout their child’s life, even at a time when these treatments offer little
benefit (Gillis, 2008). Others may accept that their child will require only palliative care and symptom
relief, but will find it immensely painful to do so (Rushton, 2005). Supporting families through this
process, and providing parents with the assistance and resources they need to effectively care for
their ill child and any other children is therefore essential.
1.2 Supporting Families
The care and support children with life-limiting conditions and their families might need is significant
and wide ranging, and should take into account the needs of the child, parents, and other family
members. Whilst parents often come to view themselves as ‘experts’ in the care of their child (Kirk
and Glendinning, 2002), the availability of appropriate support is identified as an essential resource
for families of children and young people who have a life-limiting condition (Nicholson, 2011; Hunt
et al., 2013). As well as helping families to become more resilient by increasing the resources
available to them, the right support can also reduce both the presence of stressors in families’ lives
and the potential of those stressors to affect their quality of life (Hunt et al., 2013). The importance
of having the right support is evident in many of the studies exploring the needs of families with
disabled children; technology-dependent children; children with complex health care needs; and
children with life-limiting condition (Nicholson, 2012), and as Craft and Killen (2007) point out can
“make a real difference to the quality of the lives of children and families” (p.43).
Although having appropriate resources and assistance to draw upon is identified as a coping
resource for families, one of the key stressors parents draw attention to is the inadequate provision
of care, the fragmented nature of services, and the poor communication channels with professionals
and service providers (Beresford, 1994; Kirk and Glendinning, 2004; Heller and Solomon, 2005;
Corlett and Twycross, 2006). Despite an increase in the number of children’s hospices and
community children’s nursing teams across the UK, research continues to show that many families
have unmet needs and experience extreme pressure points during their child’s life (Craft and Killen,
2007; Hunt et al., 2013). A recent qualitative evaluation of a children’s hospice found that while the
support provided to families by their hospice was highly valued, parents were often at breaking
point by the time they were referred for hospice care (Nicholson, 2011). The study also highlights
the importance for parents of having a regular break from caring for their child, and this is confirmed
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in a larger study of families with disabled children, which found that “families are still left to reach
breaking point, experience ill health and lead diminished lives as short break services are not being
provided to help them care for their sons and daughters” (Mencap, 2006).
Allocating families with a keyworker who can navigate the system on their behalf and ensure that
families are adequately supported has been promoted as a potential solution (Greco et al., 2007).
However, as Noyes (2006) points out, it is difficult for a single professional to have a complete
overview of a child’s package of care, particularly when there is an overlap between health, social
care, and education. Consequently, the role of co-ordinating care often falls to parents (Hunt et al.,
2013), who report difficulties identifying what help is available and from where, and are sometimes
subject to poor assessments of need and limited support from the professionals whose job it is to
co-ordinate care for them (Hunt et al., 2013; Noyes et al., 2013). The difficulties families experience
in accessing the right support are particularly acute when a young person makes the transition from
children’s to adult services (Clarke et al., 2011; Nicholson, 2012; Kirk and Fraser, 2013). Clarke et al.
(2011) found that even with a key worker (or transition worker), there were high levels of unmet
need and increased stress for parents.
Parents emphasise the importance of living ‘ordinary lives’ at home (Hunt et al., 2013). This includes
taking part in social and leisure activities, as well as being able to effectively care for their child and
other children in the family. For parents, enabling their child to live a full and active life is extremely
important, in part because of their shortened life-expectancy but also to help compensate for the
distressing and sometimes painful symptoms children and young people have to live with
(Nicholson, 2011). With access to the right organisations, children and young people with life-
limiting conditions can lead fulfilling and meaningful lives (Aldridge, 2007). However, the on-going
difficulties in accessing support can prevent children and parents from living a ‘normal’ family life
and engaging in the activities they enjoy (Noyes, 2006). To help achieve this, individual professionals
involved in a child’s care must work together “in a collaborative relationship that extends beyond
the boundaries of hospitals and institutions” (Steele, 2002, p.433), and establish a web of continuing
support around the whole family (Together for Short Lives, 2013).
1.3 Paediatric Palliative Care
Paediatric palliative care services aim to enhance a child’s life expectancy and their quality of life,
adopting a holistic approach to care and providing support for the whole family (ACT (The
Association for Children’s Palliative Care), 2011). Palliative care planning should begin around the
stage of diagnosis and continue for a number of years in order to meet the continually changing
needs of the child and family. Paediatric palliative care is provided by a range of organisations across
the public, private and voluntary sectors, and support will often continue through death and
bereavement. Offering an array of holistic support and care provision, palliative care is described as:-
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“an active and total approach to care, from the point of diagnosis or recognition,
embracing physical, emotional, social and spiritual elements through death and
beyond. It focuses on enhancement of quality of life for the child/young person and
support for the family and includes the management of distressing symptoms,
provision of short breaks and care through death and bereavement.”
(ACT, 2011)
A key challenge to building effective palliative care provision has been the mixed evidence regarding
prevalence and need. Different estimates of the number of children with life-limiting conditions
(Cochrane et al., 2007; Fraser et al., 2012) and varied approaches to diagnosing children with
unknown diseases and complex healthcare needs go some way to explaining why this has proved
difficult (Craft and Killen, 2007). Using inpatient Hospital Episode Statistics data, the most recent
estimates of prevalence published by Fraser et al. (2012) provide a more accurate and
comprehensive picture of what the needs for palliative care among children and young people in the
UK might be. Examining data by child’s age, condition type, ethnicity and geographical region, this
study found that “the highest requirement of children with life-limiting conditions for palliative care
occurs in the first year of life and decreases during childhood” (p.e927). However, increasing survival
rates have resulted in a growth in the number of children across the age range. There is also higher
prevalence among certain ethnic minority groups when compared with the white population, and
within geographical areas of higher deprivation (Fraser et al., 2012).
Examining prevalence by geography, Craft and Killen (2007) identified a large variation in numbers
across different Strategic Health Authorities with some areas containing as many as 2641 children
(age 0 – 19 years) with palliative care needs and others containing only 895. Fraser et al. (2011)
compared prevalence by Local Authority area, which varied from 25.5 per 10,000 of the population
to 45.3. Better estimates of prevalence can help with planning of palliative care services, and draw
attention to the potentially different funding requirements at the Local Authority level. For example,
Fraser et al. (2011) point to the greater demand among certain ethnic minority populations and
areas of deprivation, which tend to be clustered within distinct geographical areas. However, whilst
service planning should take into account the demography of local populations, Craft and Killen
(2007) note that due to the small numbers of children with life-limiting conditions in some areas,
services need to be configured across a wider geographical area (p.22).
Although better data on prevalence can help ensure equity of funding and provision by geography,
one of the difficulties of establishing effective and sustainable services relates to the varying and
multiple needs among this sub-set of children with complex healthcare needs (Craft and Killen,
2007). Important differences include the distinctive illness trajectory among children; the sheer
number of different diseases that are life-limiting; the unique circumstances of family and home life;
and the resources available informally to parents to enable them to effectively care for their child.
Modelling need for palliative care based on estimates of prevalence could therefore be misleading,
Page | 15
and should take into account other research examining the care and support needs of families, and
the illness trajectory and care pathways for particular illness groups.
In recent years paediatric palliative care has developed as a sub-speciality in medicine, and Hain et
al. (2011) believe that the shared vision underpinning paediatric palliative care has helped to drive
“the specialty forward and allowed collaboration across divides of discipline, profession, locality and
sector (p.384). There has also been an increasing interest among policy makers to develop services
that better meet the care needs of seriously ill children and their families (Department of Health,
2008; NHS England, 2013). For example, the 2013/14 NHS contract for paediatric palliative care
services is underpinned by the broad philosophy of paediatric palliative care presented above, and
sets out the aim for services to:
“help children and their families achieve a “good” life and a “good” death and
barriers should be removed to enable the child and family to lead as “ordinary” a life
as possible. Children should be free from distressing symptoms, and children and
families should receive support to reduce the emotional and psychological effects of
the child or young person’s condition through the provision of optimal specialised and
well-co-ordinated services.”
(NHS England, 2013, p.3)
However despite increased investment and policy attention, paediatric palliative care is still in its
infancy and Craft and Killen (2007) note that it “is not yet widely recognised as a specialism in its
own right” (p.15). In fact a recent review of services in England revealed geographical variation
across and within the different regions, with some examples of excellent practice, yet many areas in
which provision was inadequate (Craft and Killen, 2007). Variation in provision was also found in a
review of specialist services for children and young people with neuromuscular diseases, which
revealed that “patient survival is significantly reduced for some conditions in those regions of the
country where comprehensive neuromuscular services are not provided” (Muscular Dystrophy
Campaign, 2007, p.3). As well as geographical variation, the Craft and Killen review identified ‘access’
as a key problem, with varying acceptance criteria among providers, uncertainty and
misunderstandings about the nature of palliative care, and reluctance among some professionals
and families about accessing palliative care services. Additionally, the review drew attention to the
need for more end of life care and bereavement support; both unique but integral components of
palliative care.
Notably, the review identified the role of voluntary organisations as vital in providing hospice and
home-based community support. Craft and Killen (2007) argue that “the voluntary sector, and the
children’s hospice movement in particular, have been leaders in the development of services and
have remained a vital partner in service delivery and innovation ever since” (p.16). The important
role played by children’s hospices is confirmed by parents and young people, who identify the
support provided by their children’s hospice as crucial to their quality of life (Nicholson, 2011; Kirk
Page | 16
and Pritchard, 2011). However, children’s hospices provide only one albeit an essential part of a
wider package of care that some families need, and although the number of children’s hospices
continues to expand there were only 44 registered children’s hospices in the UK in 2011, many of
which had differing eligibility criteria and service provision (Hallam et al., 2011). Annual mapping of
children’s hospice provision shows that only a proportion of children and young people in the UK
who have a life-limiting condition are being supported by a children’s hospice each year (Devanney
et al., 2012).
Because of the holistic approach underpinning paediatric palliative care, children and their families
are often supported by a unique combination of specialist and core palliative care providers and
universal services, the latter of who may support a wider range of children with disabilities or
complex healthcare needs. Like families in other regions, families of life-limited children living in
Yorkshire and the Humber are likely to be affected by the postcode lottery of service provision and
practice identified by Craft and Killen (2007). This was confirmed in Nicholson’s (2011) study of
hospice users, with families reporting uncertainty about the role of different service providers in
supporting them; limited information about the range of support available in their local area; and
difficulties in accessing the support they needed. Whilst families highly valued the support provided
by their children’s hospice, opinions about the range of other services they had accessed were more
divided, ranging from very poor to excellent. Furthering our understanding about the range and type
of services available to families in our region is therefore essential if we are to develop sustainable
and joined-up solutions that ensure palliative care services within the region are equitable and
accessible.
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2 THE PROJECT
2.1 Project Aims
This research aims to further our understanding of the barriers to and facilitators for providing
effective and appropriate palliative care and support to children and their families. Taking Yorkshire
and the Humber as the focus of study, the research collected information about the range of
services available to children and young people with life-limiting conditions and their families living
in the region. The research also explored the views of key paediatric palliative care professionals,
service provider managers, frontline staff, parents, and young people about the care and support
available, and the strategies and resources families draw upon in order to access the support they
need.
The research aims to provide a better understanding of regional provision, therefore enabling
organisations involved in supporting children with life-limiting conditions to work together in
ensuring provision is accessible and equitable, and to develop services not currently available. The
research examines the implications for paediatric palliative care practice, and considers the future
for Martin House, as a key provider in the Yorkshire and Humber region.
Table 1: Project Phases and Methods
Phase One Phase Two Phase 3 Understanding Paediatric
Palliative Care
Mapping Regional Provision Exploring Families’ Needs for
Support
Interviews with 25 key informants involved in
paediatric palliative care
Focus group with 8 young
people to discuss project
and identify provision
Consultation with project
advisory group (n=13) and
academic consultant
Narrative review of
paediatric palliative care
literature
Mapping of service providers (388 organisations identified)
Survey of organisations identified
(274 agreed to take part, 181
returned questionnaire)
Analysis of survey data to examine
service types, locations, funding,
referral routes, access & availability
Examination of sample of referrals to
Martin House (n=32) to examine
referral process and referral routes
In-depth interviews with 24 parents and 4 young people (number of
families = 24, including 4 bereaved)
Semi-structured interviews with 19
frontline staff (2 GPs, 6
paediatricians, 7 nurses, 4 social
workers)
Transcription and thematic
qualitative analysis of interview data
Secondary analysis of young person’s
focus group and key informant
interview notes
2.2 Project Methods
The project involved three overlapping phases, underpinned by the different aims of the study –
understanding paediatric palliative care; mapping regional provision; and exploring families’ needs
for support. The methods used within each of the three phases are summarised in Table 1, which
Page | 18
also contains information about the number of participants in each phase. In total, 28 parents; 12
young people; 53 paediatric palliative care professionals, service managers and frontline staff; and
181 service providers took part in the research.
Details about each phase and the methods used are provided below.
2.3 Phase One – Understanding Paediatric Palliative Care
SUMMARY OF METHODS
Interviews with 25 key informants involved in paediatric palliative care
Focus group with 8 young people who have a life-limiting condition
Consultation with project advisory group (13 members)
Narrative review of paediatric palliative care literature
2.3.1 Key informant interviews
To explore current understanding of paediatric palliative care, a sample of key informants with
expertise and experience of working with children and young people with life-limiting conditions
were interviewed about their perceptions and understanding of paediatric palliative care, their views
on the barriers and facilitators to providing effective palliative care, and their knowledge of current
configuration and future developments in this evolving area of practice. A topic guide was developed
to help structure the interviews and ensure that key questions were covered (see Appendix G).
Key individuals in the funding organisation who were known to collaborate with paediatric palliative
care providers across the UK were asked to help with identifying key informants in the region and
nationally. The UK literature was also drawn upon to identify potential participants and key national
charities were identified. 25 key informants were recruited and interviewed in total during the
period July 2011 to December 2011. 14 participants were based in the region, either with a strategic,
management, or specialist clinical role in paediatric palliative care. The remaining 11 participants
were drawn from a range of organisations involved in the promotion, research, development, and
delivery of palliative care services for children and their families in the UK.
2.3.2 Focus group with young people
One focus group was conducted with young adults (age 16 and over) who have a life-limiting
condition. As well as consulting on the project’s design and discussing how to effectively engage
young people in the project, the group was asked to discuss the range of organisations involved in
their lives and identify any barriers they had experienced in accessing them (see Appendix A for
topics covered). The focus group was held at the weekend so that young people attending school or
college could attend, and ran for two hours. One researcher led the discussion and a second
researcher made notes and checked on participants’ consent throughout.
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Eight young people, three females and five males, aged between 16 and 26 took part in the focus
group. They had been supported by Martin House for varying lengths of time, came from different
localities within the region, and had a range of conditions at different stages. The group did not
include young people who had not accessed a children’s hospice.
2.3.3 Project advisory panel
A project steering panel was established at Martin House. Membership comprised research
experts and practitioners working in the area of paediatric palliative care from across the region, and
parents of children with life-limiting conditions. The aims for the steering panel were to consult on
the project design and methods, and to help develop appropriate parameters and tools to facilitate
effective service mapping and understanding of families’ needs.
Five panel members were based at Martin House, as the funding organisation; three were clinicians
who worked at other organisations providing paediatric palliative care in the region; one was an
academic researcher with expertise in paediatric palliative care research; and four parents of
children with a life-limiting condition also sat on the panel. The panel met four times during the
course of the project, with meetings lasting between 1.5 and 3 hours.
2.3.4 Narrative literature review
A narrative overview of the paediatric palliative care literature, and the published research and
literature concerned with children and young people who have life-limiting conditions was
conducted as part of this phase. This provides a “comprehensive narrative syntheses of previously
published information” (Green et al., 2006, p.103), which is presented in the first chapter of the
report as a background to the study. In summary, the review highlights the main themes running
through the published literature, and presents the key findings from research already carried out.
The narrative overview also included papers reporting on children with complex healthcare needs
and children who are technology-dependent, which had been sourced as part of a previous narrative
review conducted by the author (Nicholson, 2012). As well as providing a background to the project,
this body of knowledge is also used alongside the findings from the research reported here to inform
the development of implications for practice and recommendations for Martin House.
2.4 Phase Two – Mapping Regional Provision
SUMMARY OF METHODS
Mapping exercise involving identification of 388 organisations
Survey of organisations identified in mapping exercise,
with 202 agreeing to take part and 181 completing a questionnaire
Analysis of survey data to examine service types and locations,
funding arrangements, referral routes, access and availability
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Examination of random sample of 32 referrals to Martin House to examine
referral process and referral routes
2.4.1 Service mapping exercise
The aim of the service mapping exercise was to identify the range and type of services that are
available to provide care and support for children and young people with life-limiting conditions and
their families living in Yorkshire and the Humber. The findings from the first phase of the project,
Understanding Paediatric Palliative Care, were used to set appropriate parameters for mapping
service provision. The process and information used to set parameters is summarised in Chapter 3,
as it offers an insight into the work that must be undertaken by families and organisations involved
in key working or signposting to identify provision in the region. A reflection on the key barriers and
enablers encountered by the researcher tasked with mapping provision is also provided in Chapter 3.
2.4.2 Survey of service provision
The aim of the survey was to collect more detailed information about the range of services available
to children and young people with life-limiting conditions and their families identified during the
mapping phase. Because the research aimed to identify the barriers and facilitators to accessing
services, data about referral routes, acceptance criteria, waiting lists and service charges were
collected in addition to information about the services provided by the organisations identified.
During the mapping phase, each service identified was contacted about the research and asked to
take part in a survey about paediatric palliative care provision. Those who agreed were given the
option to complete the survey online or on paper. A name, phone number and email address was
taken during the initial contact.
The questionnaire was developed through continual consultation with key paediatric palliative care
professionals and the project advisory group. The questionnaire was also developed in line with the
annual mapping of children’s hospice services carried out by Durham University Mapping Unit and
Children’s Hospices UK, who both agreed for relevant question sets to be utilised for the project
(Devanney et al., 2012).
Data were collected about the following:
The organisation type and funding
A description of the service
The referral process and criteria
Access and waiting times
The range of services offered to families
End of life or bereavement services provided
Staffing
Details of any equivalent adult service
Page | 21
The questionnaire was piloted with ten service providers from different sectors and offering
different types of support. The pilot organisations provided feedback to the research team about
completing the questionnaire. This led to some minor modifications prior to administering the
survey. Any new data required from pilot organisations following modification to the questionnaire
was obtained by telephone. The final version of the questionnaire was printed for distribution
(included as Appendix H.) An online version was then developed using the online survey tool Survey
Monkey, and subsequently piloted by two organisations and members of the project advisory group.
All potential paper participants were posted the questionnaire along with an invitation letter and
instructions for completion (see Appendix I for instruction sheet). The pack also contained a
stamped addressed envelope to return to the research team. All potential online participants were
emailed a unique link to the online questionnaire which allowed them to complete the survey. The
unique link enabled participants to complete the questionnaire over more than one sitting, returning
to it on different computers and at different times so long as they used the link provided. Where
participants had difficulties accessing the online questionnaire, they were posted a hard copy to
complete instead. Several reminders were sent out by email for online participants and by post for
paper participants. Towards the end of data collection, services not already having completed the
questionnaire were followed up by telephone.
The data in completed paper questionnaires were input into Survey Monkey manually. The entire
dataset was then downloaded into Microsoft Excel, and cleaned up for analysis. Descriptive statistics
were obtained in order to examine the range of services available from different organisations and
the referral and acceptance criteria that may lead to inequity and barriers to access. A summary
sheet for each organisation containing the key information and description about the service was
produced for use by the funding organisation (see sample Summary Sheet in Appendix L).
2.4.3 Audit of Martin House referrals
This part of the project aimed to explore the process of referral into palliative care services to
identify barriers to access. It was also used to identify the key referral sources in order to identify the
professional groups and frontline staff to approach for interview. The design and preliminary
analysis of a sub-sample of referral documentation drawn from all referrals made to Martin House
over a six month period in 2011 was carried out in 2012 as part of the project. The audit was
completed as a separate piece of work by Martin House in order that the referral data collected
could also benefit the organisation. The audit collected information on the quality and quantity of
information, and identified missing, unclear, and unnecessary information contained in referral
forms and supporting documentation. The design of the audit, some of the data collection, and the
cleaning of data for analysis were completed as part of this project (see Appendix I and J for data
collection guidance and datasheet).
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2.5 Phase Three – Exploring Families’ Needs for Support
SUMMARY OF METHODS
In-depth semi-structured interviews with 24 parents and 4 young people
(total number of families was 24, including 4 bereaved families)
Semi-structured interviews with 19 frontline staff including 2 GPs, 6 paediatricians,
7 nurses and 4 social workers
Transcription and thematic qualitative analysis of interview data
Secondary analysis of young person’s focus group discussion
Secondary analysis of key informant interview notes and data
2.5.1 Family and staff interviews
To explore the barriers and facilitators to accessing paediatric palliative care, this phase of the
project employed in-depth semi-structured interviews with a sample of professionals involved in
referring families for support and co-ordinating care; parents of children and young people with life-
limiting conditions; and young people themselves. Parent interviews explored how parents accessed
services and how well their needs were met over time. They also explored perceived gaps in
provision, and the barriers and difficulties experienced by parents in accessing the support they
needed. Interviews with young people focussed on the services they were using at the time of
interview, and the services that were important to them. Staff interviews looked at the barriers and
facilitators to accessing support, and the role of staff in supporting families. Topic guides were
developed and piloted, and used to structure interviews and ensure key topics were covered (topic
guides for young people aged 18 and over; young people aged 12 to 17; parents; bereaved parents;
frontline palliative care staff; and other palliative care staff are included as Appendices B to G).
Families were recruited by post, utilising five service providers across the region as gatekeepers for
recruitment. Recruiting organisations included two children’s community nursing teams, one
specialist neurology centre, one children’s hospice, and two local voluntary organisations. The role
of recruiting organisations involved identifying suitable families to take part, and sending them an
invitation pack provided by the researcher. The funding organisation was not used for recruitment of
families as it was felt that the views of families already supported by Martin House had been
published elsewhere and would offer the project a biased sample. However, many of the families
who were identified for the research and agreed to take part were also users of Martin House.
It was hoped that a minimum of twenty families would take part in this stage of the project with sub-
samples drawn from the four broad categories of life-limiting and life-threatening conditions used in
paediatric palliative care (Together for Short Lives, 2013). Recruiting organisations were provided
details of the four categories (included as Appendix M). A sample of bereaved parents was also
sought for inclusion in the research to help shed light on the services available at the end of a child’s
life, and for bereavement. A purposive sampling strategy was used to recruit families, with efforts to
include the following:
Page | 23
Families of children recently diagnosed with a life-limiting condition
Families with more than one life-limited child
Families from minority ethnic backgrounds
Single and lone parent families
Families in which both parents work.
For young people to participate, a certain level of understanding was required in order that they
would be able to reflect on the services and professionals involved in their life. Following
consultation with the project advisory group it was decided that young people must be 12 or over to
take part, and their cognitive ability must be at the expected level for children of this age. For young
people under the age of 16, their parents were sent the invitation pack and asked to provide an
information leaflet to their son or daughter if they were happy for them to take part. No young
person under the age of 16 agreed to take part. Young people aged 16 and over were sent an
independent invitation to acknowledge their legal status as autonomous decision makers.
In total, 24 parents from 20 families took part in the study, including four couples, five fathers and
eleven mothers. Four of the families were bereaved – one father, two mothers, and one of the
couples. Four families had not been supported by Martin House, including two of the bereaved
families. As well as including children with a range of conditions and illnesses across the ACT
categories, families varied in their composition, geographical location, ethnicity and socio-economic
background. The sample included two families of South Asian ethnicity, reflecting the wider ethnic
make-up of families in certain parts of the region (Taylor et al., 2010). All parents were interviewed
in person at their homes.
Four young people took part in a face to face interview at home with the researcher, two of whom
were not Martin House users. Their ages ranged from 18 to 23, and they all had a different diagnosis
and prognosis. Three were male and one was female.
The sampling strategy for staff was determined from the examination of Martin House referrals and
key informant interviews to identify the professional groups most likely to refer families for
additional support or to co-ordinate their care. A minimum of twenty professionals were sought with
sub-samples drawn from paediatricians, children’s community and specialist nurses, social workers,
and GPs. To identify potential participants, the services identified during the mapping phase were
examined to locate organisations in which the professional groups to be interviewed worked. The
organisation was then contacted by phone to discuss the project and to arrange for invitation packs
to be distributed among teams where agreed.
Nineteen professionals took part in an interview. This included two GPs; six paediatricians (including
community paediatricians and hospital-based paediatric consultants); seven nurses (including
children’s community nurses and specialist nurses based in both the community and hospital
settings); and four social workers (all of whom were based within children’s disability teams).
Page | 24
Professionals were given the choice to be interviewed in person or by telephone. 15 professionals
chose to be interviewed by telephone. The remaining four were interviewed at their place of work.
Due to the difficulties of gaining approval from NHS trusts to carry out the work and the low
response rates among the families and professionals invited, the samples achieved were of
convenience. Although the final sample size for each interview group was guided by data collection
and analysis on the basis of achieving data saturation, the findings must be viewed with care. In
particular, the small number of bereaved parents, young people, and certain professional groups
may mean that the findings do not represent the variety of opinion and experience that exists
among families and professionals in the region.
2.5.2 Analysing interview and focus group data
The audio recorded interviews were transcribed verbatim and notes from interviews and focus
groups not recorded were typed up in detail. The qualitative analysis of interview and focus group
data followed the process adopted by Spalding and McKeever (1998). This involved breaking down
transcripts and notes into “meaning units” containing one idea or piece of information relating to
either families’ needs for paediatric palliative care; the resources and strategies families and staff
can draw upon to meet families’ needs; or the barriers and facilitators to accessing service providers.
These ‘comprehensible segments of text’ were grouped together to form preliminary categories,
which were first examined individually, and then compared to each other. During this process,
categories were refined and themes developed (Spalding and McKeever, 1998, p.236). Because the
decision to include verbatim quotations was made following the analysis, the selection of verbatim
quotations enabled the researcher to re-examine how relevant the “meaning units” were to the
theme they were assigned to.
2.6 Research Ethics and Governance
Ethical approval for this research was granted by the National Research Ethics Service in October
2011. Management approval was gained from each NHS Acute and Primary Care Trust within the
Yorkshire and Humber region. Different requirements and conditions were set by individual Trusts as
part of the approval gained. The process of obtaining approval from the Trusts was carried out
between October 2011 and May 2012.
Following strict standards of ethical practice, particular attention was paid to confidentiality and
anonymity, and the sensitive area in which this research was being carried out. The research
obtained informed consent from all participating individuals and services. All individuals and services
were provided with written information about the project and what taking part would involve, as
well as details about how the information collected from them would be used.
Parents and young people who were invited to take part were given time to decide whether they
wished to participate and it was emphasised in writing and in person that their participation was
Page | 25
entirely voluntary and that it would not affect the support they received. Due to the sensitive nature
of this research, informed consent from parents and young people was checked throughout
participation, and appropriate information made available regarding additional support and services.
Three parents who became distressed during participation about the lack of support they were
currently receiving were provided with information about additional support. One parent gave
permission for the researcher to follow this up with the Head of Care at Martin House. Another
parent gave permission for the researcher to provide their details to a local family support service.
Page | 26
(e.g. personal assistant / carer) Holidays
Complementary
therapies
3 PROJECT FINDINGS – PAEDIATRIC PALLIATIVE CARE PROVISION
3.1 Setting Parameters for Service Mapping
The mapping process commenced in July 2011 and finished in June 2012. The first six months
involved reviewing the literature about paediatric palliative care to determine the mapping
parameters, and collecting information from key informants and organisations about their
understanding of paediatric palliative care and the provision that should be included. Parameters for
mapping were also discussed in the young person’s focus group and with the project advisory group
to ensure that appropriate boundaries were set. Following preliminary analyses of the information
collected, it was agreed at a project advisory group meeting that the primary inclusion criterion for
services was that the support provided by the service fell within the ACT (2011) definition of
palliative care employed for the research:
“Palliative care for children and young people with life-limiting conditions is an active and total
approach to care, from the point of diagnosis or recognition, embracing physical, emotional,
social and spiritual elements through death and beyond. It focuses on enhancement of quality
of life for the child/young person and support for the family and includes the management of
distressing symptoms, provision of short breaks and care through death and bereavement.”
Because of the ambiguity around what might be included as ‘physical, emotional, social and
spiritual’, a list of the main types of care and support identified from the initial consultation period
and literature review was developed to guide the mapping exercise. As well as guiding the search for
service provision, this list was also used in the questionnaire to collect information about service
types and correlates well with the service types used in the children’s hospice mapping exercise.
Table 2: Service Types for Mapping and Survey
Paediatric Palliative Care Service Types
Short breaks for child ONLY Telephone advice / contact Parent support group / network
Short breaks for child and family Practical support (e.g. home help) Befriending
Dedicated hospice care Contact / key worker visits Play therapy
Consultant-led palliative care Leisure and sport activities Physiotherapy
Nursing care Wish granting Psychological therapies / counselling
Personal care
Day care Grants and financial assistance Other therapies (e.g. music / hydro)
Emergency care Financial and benefits advice Sibling support
Dedicated end of life care Equipment and adaptations Antenatal support
Dedicated bereavement support Transport Neonatal support
Symptom management Signposting Spiritual support
Training and education for people who work with children and families
Page | 27
The mapping process was also underpinned by the three-tiered system of paediatric palliative care
that Craft and Killen (2007) recommended, which would offer a collection of universal, core and
specialist services, underpinned by a joined-up approach, and available for children to dip in and out
of when appropriate. This system is illustrated in Figure 1 below and indicates the types of
organisations that might be involved in providing elements of palliative care.
Figure 1: Three-Tiered System of Palliative Care Services for Children and Young People
(adapted from Craft and Killen, 2007)
As well as collecting information about regional organisations providing what could be described as
palliative care, it was also recommended by many of the key informants interviewed and during
discussions with the project advisory group that national organisations providing care and support to
children and their families living in the region should also be mapped.
Six months were allowed for identifying services. The Together for Short Lives (what was then ACT)
directory was used as the starting point for identifying services. The following strategies were then
employed for locating other services available to children and young people with a life-limiting
illness and their families included:
searching the Internet using relevant search terms
utilising existing service directories, for example Together for Short Lives
drawing on information provided by staff, parents and young people taking part
taking advice from the project advisory panel
conversations with staff at the funding organisation
asking service provider contacts to help identify other service providers.
Page | 28
Table 3: Geographical Categories for Service Mapping
To categorise services geographically, postcodes was used to determine which Local Authority area
in the Yorkshire and Humber region services were located (see Figure 2 for map of Local Authority
areas). This information was collected for each service where possible and stored in the Excel
datasheet created for mapping services. Organisations outside of the region which were available to
children and their families were classified as National. Table 3 provides a list of geographical
categories in the mapping database.
Figure 2: Map of Yorkshire and the Humber by Local Authority Area
Page | 29
Barnsley Metropolitan Borough Council North East Lincolnshire Council
Bradford Metropolitan Borough Council North Lincolnshire Council
Calderdale Council North Yorkshire County Council
Doncaster Metropolitan Borough Council Richmondshire District
East Riding of Yorkshire Rotherham Borough Council
Hambleton District Council Ryedale District
Harrogate Borough Council Scarborough Borough Council
Hull City Council Selby District Council
Keighley Town Council Sheffield City Council
Kingston upon Hull City Council York County Council
Kirklees Metropilitan Borough Council Wakefield Metropolitan Borough Council
Leeds City Council NATIONAL ORGANISATIONS
3.2 Service Provision for Families in the Region
388 services were identified during the process of mapping organisations available to families in
Yorkshire and the Humber that provided one or more of the services included in Table 2.
278 (72%) of these were located in the region. The remaining 110 were made up of services
categorised as National (28%). The proportion of national to regional organisations is shown in
Figure 3. Figure 3: Proportion of National and Regional Services
28%
Regional Services
National
Services
72%
Figure 4 on page 31 also shows the proportion of national to regional services but this time by Local
Authority area. This illustrates the variation in provision across the region and the clustering of
services within larger cities. The proportion of services in Leeds compared to other big cities is larger
than expected. However, some of the NHS services located in Leeds are available to families
throughout the region. Examples of this include the Regional Paediatric Neuromuscular Team and
the Paediatric Oncology services that are based in Leeds.
Some services such as Specialist Disabled Children’s Services are based across several localities but
have only been counted once and included within the Local Authority area in which their office is
based. For example, North Yorkshire County Council have three specialist disabled children’s service
teams: West, covering Harrogate and Craven districts; Central, covering Hambleton, Richmondshire
and Selby districts; and East, covering Scarborough and Ryedale districts.
Page | 30
Figure 4: Number of National and Regional Services by Local Authority Area
York City Council
Wakefield Met Borough Council 31
29
Sheffield City Council 12 Selby District Council
Scarborough Borough Council
Ryedale District
Rotherham Borough Council
Richmondshire District
North Yorkshire County Council
North Lincolnshire Council
North East Lincolnshire Council
2
5
3
4
1
3
5
5
Leeds City Council 66 Kirklees Met Borough Council 8
Kingston upon Hull City Council Keighley Town Council
Hull City Council
5
3
5
Harrogate Borough Council 12 Hambleton District Council
East Riding of Yorkshire
Doncaster Met Borough Council
6
6
7
Calderdale Council 15 Bradford Met Borough Council 35 Barnsley Met Borough Council 10
National Organisations 110
0 20 40 60 80 100 120
Figure 5 on page 31 shows regional services by Local Authority area to illustrate the variation in
provision across Yorkshire and the Humber.
While this shows some clustering of services around the larger cities of Bradford (13%) and Leeds
(24%), there are relatively fewer services in Hull and Sheffield, which as Figure 2 shows are both
highly populated areas. In fact, searching for services in Wakefield and York yielded numbers that
were double, 29 and 31 respectively, than those identified in the combined areas of Kingston upon
Hull and Hull City Council which yielded 10 services, and Sheffield which yielded a total of 12
services.
It cannot be determined whether there is less provision in these areas or if the mapping process was
biased towards the area in West Yorkshire due to the contacts within the area and the snowballing
effect that this led to in identifying services. It is also possible that the strategies within different
Local Authorities, NHS Hospital Trusts and what were then NHS Primary Care Trusts differed in
relation to making information available about the range of services provided.
Page | 31
Figure 5: Proportion of Regional Services by Local Authority Area
11%
4%
Barnsley Met Borough Council
Bradford Met Borough Council
Calderdale Council
13% Doncaster Met Borough Council
East Riding of Yorkshire
10% Hambleton District Council
Harrogate Borough Council
4% 1% 2% 1%
5%
3% 2%
2%
Hull City Council
Keighley Town Council
Kingston upon Hull City Council
Kirklees Met Borough Council
Leeds City Council
1% 0% 1%
2%
2%
2% 1%
2%
4% North East Lincolnshire Council
North Lincolnshire Council
North Yorkshire County Council
Richmondshire District 3%
Rotherham Borough Council
24% Ryedale District
Scarborough Borough Council
Selby District Council
Some of the difference within each Local Authority area was influenced by the number of charities
based in each area as well as statutory provision. For example, 35% of the services identified in
Leeds were made up of voluntary sector organisations including registered charities. This compared
to only 14% of services located in Bradford.
Figure 6 shows the different organisational status of all the services identified. Organisations were
classified as Local Authority; NHS; Private Company; Voluntary Sector; Social Enterprise; and Other.
‘Other’ included parent and professional groups and networks, and local services that proved
difficult to classify into a fixed category.
Just over 75% of all services identified were made up of voluntary sector organisations and Local
Authority services. Just over half (51%) of all services identified were provided by voluntary sector
organisations. The service mapping process therefore confirms the important segment of care
Page | 32
provided by national, regional and local charities and voluntary services, many of which focus on the
wider needs that a child and their family might have over and above any medical and nursing care
that is required.
Figure 6: All Services by Organisational Status
1%
2% 3%
26%
Local Authority
NHS
Voluntary Sector
Private Company
Social Enterprise
51% 17%
Other
Figure 7: National Services by Organisational Status
2% 2%
Voluntary Sector
NHS
Other
96%
Page | 33
Figure 7 shows the national services by status type. Of the national organisations 96% were provided
by the voluntary sector. Many of the national charities were condition specific, providing a wealth of
information and support to families. For example, several condition specific charities had a specialist
nurse service as part of their organisation and held events that families could attend. There were
fewer generic charities that provided equivalent support to families whose child had no diagnosis. A
small number of national services provided specialist bereavement support including signposting to
services available to families in their area. National charities also included wish-making
organisations, holiday providers, and services that provided financial advice and in some cases
grants. The mapping of services illustrates the important work carried out by national charities in the
region, and the range of support and in some cases direct care that is available to children and their
families.
Figure 8 shows the regional services by status type. This is quite different to the whole picture and
the national picture, with only a third (33%) of services being provided by the voluntary sector, and
the largest group of services being provided by Local Authorities (36%). NHS providers make up only
22% of services identified, which is an unexpected finding. However, this may be due to the large
number of children and young people supported by individual services (for example the specialist
community children’s nursing team in Leeds supports 150 children and young people with life-
limiting conditions). The difficulties of identifying more generic NHS services that would be useful to
children and young people with life-limiting conditions and their families may also help to explain
the difference in numbers. For example, specialist continence services and physiotherapy teams that
support all children with a need.
Figure 8: Regional Services by Organisational Status
2%
3% 4%
36% Local Authority
NHS
33% Voluntary Sector
Private Company
Social Enterprise
Other
22%
Page | 34
Table 4: Main Types of Provision Identified
Among services in the region, there are four children’s hospices and a small number of other
specialist paediatric palliative medical and nursing providers. In most Local Authority areas, it was
possible to identify an NHS children’s community nursing team, an NHS neo-natal unit, a continuing
care team, and a Local Authority disabled children’s social work team. However, in some cases the
names were misleading and ambiguous, and these services proved difficult to locate. Other services
present in most Local Authorities included a Families Information Service and a Parent Partnership
Service. Short break providers and respite centres were also located within most Local Authority
areas, although their numbers were small.
Other provision was more sporadic, for example charities that provide wheelchairs; yoga therapy;
art and drama groups; a rural therapeutic centre; parent groups; pony riding therapy, and were
therefore specific to particular locations and families. There was also little evidence of dedicated key
worker provision. The main types of provision identified are provided in Table 3. A full list of key
words and service types identified from the mapping exercise are provided as Appendix N.
3.3 Reflections on Mapping and Contacting Services
There is a wealth of services available to families that offer a wide range of support. However, there
is little consistency between and within areas in relation to the provision available; the
categorisation of provision; and the means by which services can be identified. The process of
locating services was arduous and incredibly time consuming with many hours spent trawling the
Internet, browsing through directories and link pages on service websites, and speaking directly to
service providers, many of whom offered information about services they were aware of or
resources that might help to identify further services.
The process of identifying services commenced in December 2011 and officially ended in August
2012, although services identified during the initial survey data collection period (from August 2012)
were included and subsequently contacted about the survey. In May 2012 the database contained
Page | 35
NHS Children’s Community Nursing Teams Disabled Children’s Social Work Teams
Specialist NHS Palliative Care Providers NHS Continuing Care Teams
Bereavement Services and Charities NHS and Other Specialist Therapy Services
Family Information and Signposting Services Portage Services
Parent Partnership Services Youth Clubs / Play Schemes / Holiday Clubs
Grant and Equipment Providers Family Support Groups and Forums
Condition Specific Charities Short Break and Respite Providers
Wish Making Organisations Children’s Hospices
Providers of Social and Leisure Activities Providers of Special Trips and Family Holidays
approximately 130 services, a combination of both local and national. At this stage, each service was
contacted by telephone to inform them about the project and to ask whether they would be happy
to participate in the survey. The process of identifying services continued and by August 2012 a
further 250 services had been identified. Data saturation had been obtained to a satisfactory degree
by this time, as further signposting yielded very few new services. The faster pace at which services
were identified during the latter stages of mapping was facilitated by the increased knowledge about
how to locate services online, and the snowballing effect of contacting the services identified and
asking them to identify other providers in their local area.
Certain websites and resources were invaluable, containing a list of services based within a
particular area or links to national charities or key service providers. Some Local Authority and NHS
websites contained clear information about the services available and how to contact them. Others
were poorly designed and contained very little information about even the core services they
provided. A lot of information available online was also out of date. In many cases telephone
numbers and contact names were incorrect, services were no longer provided, and service names
had changed. Local Authority information was particularly unreliable and difficult to obtain.
Some service websites provided key contact names and telephone numbers. For other services, key
contacts had to be identified using the initial phone call to introduce the project and request to
speak to the person who would be able to help. Direct numbers were identified as a facilitator for
speaking directly with named individuals, as the experience of accessing identified contacts via a
gatekeeper sometimes led to lengthy waits and several phone calls before being able to speak to the
right person. Where telephone contact was not successful, an initial e-mail to introduce the project
led to further services agreeing to take part. Overall, Local Authority and NHS provision proved the
most difficult to locate and make contact with due to the variability in online resources and the
limited contact names and telephone numbers that were publicly available.
A small number of national organisations expressed uncertainty about whether they should be
included in the research because of the wider group of children that they supported and their lack of
knowledge about paediatric palliative care. A handful of Local Authority services were less
enthusiastic still, expressing concerns about why they had been contacted and a lack of interest in
the project, even though contact was made in some instances with children’s disability social work
teams. A small number of services stated from the outset that they did not wish to complete the
questionnaire and would not want to be included in a directory made available to the public. On
further discussion, it was revealed that their concerns were largely due to already over-stretched
resources and limited capacity. Some services already had waiting lists and they felt that advertising
themselves via a directory would mean that they would be opening themselves up to even more
families, to whom they would be unable to offer assistance.
In the main however, the overwhelming majority of services were interested and enthusiastic about
the project. They were keen to get involved and agreed that a comprehensive list of services should
Page | 36
be made available to help professionals who support families in their role, and to ease the burden
on parents, who were often tasked with the job of locating the support they required for
themselves.
3.4 Survey of Service Providers
Data collection began in August 2012 and finished at the end of January 2013. There was no
stipulated closing date for responses at this time, although final reminders sent out in November
urged service providers to complete the questionnaire before the end of 2012. Those services that
had agreed to participate but were slow to respond were followed up with letters (paper based
respondents), phone calls (online and paper based) and e-mails (online). After the initial distribution
of questionnaires, and then again after each follow up there was a flurry of responses. Many of the
participants who were sent reminders contacted the research team to apologise for not having
completed the questionnaire, with reasons including, forgetting about it; not having had the time to
do it; being overstretched and understaffed; difficulty accessing it online; mislaid the original paper
copy.
Local Authority and NHS providers were slow to complete the questionnaire. Completion by national
organisations was also slower than expected despite their initial enthusiasm about the project. On
reminding some services about the questionnaire, a significant number explained that having looked
at the questions they felt it was not relevant to their service or that they were unable to provide all
the information that was required. The focus on paediatric palliative care and support for the small
sub-group of children and young people with life-limiting conditions meant that organisations
supporting a wider group of children and young people found the questionnaire difficult to complete
in its entirety.
3.5 Survey Results
Of the 388 services that were identified, 274 agreed to take part in the survey. 201 services
requested a link to the online questionnaire and 73 services requested a paper questionnaire in the
post. In total, 181 services took part in the survey by completing some of the information requested.
127 services completed the questionnaire online and 54 services returned a paper questionnaire.
Some of the services who requested a link to the online questionnaire had difficulties accessing the
survey and were sent a paper version to complete instead. The total response rate for services
agreeing to take part was 66%.
Of the 181 questionnaires that were completed, 174 were deemed to contain sufficient data for the
purpose of analysis. The remaining seven were questionnaires that had been started online but
contained very little information. The most commonly unanswered questions were those relating to
the numbers of children supported by the service and details of staffing. This was not surprising
considering the additional work that would be required to obtain these figures; the difficulties
Page | 37
reported by some services in identifying frontline staff due to their organisational structure; and the
work required to count the number of children and young people with life-limiting conditions they
supported. This was confirmed through discussion with service providers during the data collection
period, and feedback from many of the services who were sent reminders or contacted by telephone
simply stated that they were too busy to complete particular sections of the questionnaire. Because
of the missing data in these sections, information about staffing and numbers of children supported
were not analysed for the research because they would offer little meaning.
174 questionnaires were included in the analysis of survey data. Table 5 provides details of the
number of organisations that completed the survey in each Local Authority area and nationally, and
also by status of organisation. Figure 9 shows the breakdown of participants by national and regional
organisation, which shows that 73% (127) of services completing the questionnaire were based
within the region. Figure 10 shows the breakdown of participants by organisational status. This
shows that over half of the respondents represented voluntary sector organisations.
Figure 9: Breakdown of Participants by National and Regional Organisations
27% Regional
Services
National
Services 73%
Figure 10: Breakdown of Participants by Organisational Status
1% 2% 2%
33%
42%
20%
Local Authority
NHS
Voluntary Sector
Private Company
Social Enterprise
Other
Page | 38
Figure 11 shows the breakdown of regional participants by Local Authority area. This shows that in
some areas no data were obtained about the services identified. In contrast, Leeds accounted for
more than a quarter of regional respondents. Figure 12 shows the breakdown of regional
participants by organisational status, again showing that a high number of participants are from
voluntary sector and local authority providers.
Figure 11: Breakdown of Regional Participants by Local Authority Area
York City Council 12
Wakefield Met Borough Council 14 Sheffield City Council 3 Selby District Council
Scarborough Borough Council Ryedale District
1 1 1
Rotherham Borough Council Richmondshire District
0 0
North Yorkshire County Council 3 North Lincolnshire Council 1
North East Lincolnshire Council 4 Leeds City Council 34
Kirklees Met Borough Council Kingston upon Hull City Council
2 2
Keighley Town Council 1 Hull City Council 4
Harrogate Borough Council 5 Hambleton District Council 3
East Riding of Yorkshire 5 Doncaster Met Borough Council 1
Calderdale Council 12 Bradford Met Borough Council 15 Barnsley Met Borough Council 3
0 5 10 15 20 25 30 35 40
Figure 12: Breakdown of Regional Participants by Organisational Status
1% 2% 2%
Local Authority
33% NHS
Voluntary Sector
42% Private Company
Social Enterprise
Other 20%
Page | 39
Loca
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2 8 6 64
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8 9
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388
1 15
11
9
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110
10
35
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7 6 6 12
5 3 5 8 66
5 5 3 1 4 3 5 2 12
29
31
47
3 15
12
1 5 3 5 4 1 2 2 34
4 1 3 0 0 1 1 1 3 14
12
174
Gra
nd
Tota
l 10
1 4
2
Table 5: Survey Response Data
Page | 40
22
66
90
35
Here are the headline findings from the survey:
79% (138) of organisations provided a service website. Among the 39 services who gave no
website, the majority were NHS and Local Authority providers including children’s community
nursing teams, disabled children’s social work teams, neonatal units, portage services, etc. Some of
these services had an online presence but no official website.
16% (27) of services stated that they provided a 24hr service. All but one of these operated 7 days
a week (one operated Wednesday to Sunday). The majority of services specified normal office
hours Monday to Friday although opening and closing times varied, with many services finishing
earlier than 5pm, and several finishing mid-afternoon on a Friday. Some services reported part-time
opening hours and services providing local social and leisure activities provided varied opening
hours. Only one organisation did not provide details of their opening hours.
16% (27) of services stated that they provided an Out of Hours Service that was more than a
telephone answering service. Seven of the services were Disabled Children’s Social Work Teams,
and the service provided was access to the Emergency Duty Team. The remaining services included
children’s hospices, respite centres and care providers, and hospital-based services.
25% (44) of services indicated that there was a charge for their service. Five of these were
providers of respite and short breaks for children and young people. Funding was available for 20 of
the organisations currently charging for their service.
22% (38) of organisations had a waiting list for their service. This varied from as little as 1 or 2 days
to as long as six months. Some services operated a priority waiting list because of the group of
children they supported. A number of services explained that their waiting list varied and there was
no average length.
52% (90) of organisations relied on fundraising activities to fund their service. A significant number
of organisations also relied on donations from individuals and business. This reflects the large
number of voluntary sector organisations available to families. Within the Other group, funding from
charities and special government grants were commonly reported. The majority of services across
the different statuses relied on several sources of funding. The exception to this included core
statutory NHS and Local Authority providers. Table 6 provides details of the main sources of funding.
Table 6: Main Sources of Funding
NHS Hospital Trust 29 NHS Primary and Community Trust
Department of Health 11 Local Authority
Donations from Individuals 80 Fundraising Activities
Donations from Businesses 65 Service Users
Other 39
Page | 41
Table 7: Details of Equivalent Adult Services
Referral routes and sources; minimum and upper age limits; geographical criteria; and additional
health-related criteria varied significantly among the services taking part, so much so that
presenting any meaningful data would not yield useful findings. Geographical criterion among the
majority of national organisations was UK wide. Some regional services also offered support to
families outside of the region. However, 12 services specified that families had to be registered with
a GP in a particular locality and 5 services specified a particular postcode area. Further details are
available on request.
21% (37) of services required information from a child’s paediatrician as part of the referral
process. 14% (24) of services required information from a child’s GP. The remainder of services did
not require this information to begin supporting a child and family.
20% (34) of services indicated that they would not be able to support families whose
understanding of English was very poor. Some of these had not encountered this situation, but did
not have any resources in place if it occurred. The remaining 140 services listed various informal and
formal routes to supporting families who speak a different language. Some relied on staff and
current users of the service who spoke different languages to help out. A very small number had
access to an internal translation service. The majority indicated that they would access a translation
service or interpreter as and when required.
43% (75) of services indicated that they provided direct care to children. This question was
included to ascertain the potential training needs among care providers in the region. Not all
services felt confident about answering this question so the figure should be interpreted with care.
51% (88) of services indicated that there was an equivalent adult service, either provided by their
own or another organisation. 13% stated that an equivalent adult service was required, but was
not currently available. Table 7 provides further details.
20% (35) of services indicated that they provided end of life care. Services were asked to provide
details of the end of life care they offered to families. Table 8 includes the main types of support
offered to children and their families.
Page | 42
No. of respondents Is there an equivalent adult service?
64 YES it is provided by our organisation
24 YES it is provided by another organisation
22 NO but an adult service is required for young people accessing our service
28 NO an adult service is not required (for example, neo-natal service)
36 NO ANSWER PROVIDED
174 TOTAL PARTICIPANTS
Table 9: Details of Bereavement Support
Table 8: End of life care provision
End of life care provided in the region
Specialist 24/7 palliative medical advice and expertise
Symptom management
End of life medical and nursing care and support at home
Help with planning and implementing Advanced Care Plans
Support for children and families at home
Respiratory support
Multi-agency key working
Emotional support for families
Play therapy for child and siblings
Practical support around the time of death
Short breaks for parents
A children’s hospice stay for end of life
A cool room at a children’s hospice
Counselling
Funeral planning and financial support
Spiritual support
Loan of equipment
24% (42) of services indicated that they provided a bereavement service. Details of the services
provided are summarised in Table 9. 15 of the 42 organisations that provide a bereavement service
also offer training and education for professionals and staff who work with children and young
people and their families.
Page | 43
Service Type Parents
Group support (e.g. workshop series, residential weekends) 10
Siblings
9
Extended family
5
Individual support (e.g. home visits, sessions at service) 25 18 16
Telephone support and advice 30 15 20
Counselling (e.g. psychologist / specialist bereavement) 9 7 5
Befriending 10 6 5
E Listening (e.g. support via email or the internet) 12 9
6
8
Play therapy 2 1
One-off events (e.g. remembrance / memorial days, picnics) 16 15 15
Signposting to other bereavement services / support 33 28
3
26
Other 5 3
Table 10: Details of Main Service Types
24% (42) of services offered short breaks for children. 28% (49) of services offered short breaks for
the child and family. Detailed information about services provided is summarised in Table 10.
Page | 44
Type of Service Number 24/7
Short breaks for child ONLY 42 16
Short breaks for child and family 49 15
Dedicated hospice care 6 5
Consultant-led specialist palliative care 6 5
Nursing care 27 15
Personal care (e.g. personal assistant / carer) 29 11
Day care 33 5
Emergency care 18 12
Antenatal support 9 2
Neonatal support 19 5
Sibling support 50 7
Spiritual support 10 4
Telephone advice / contact 86 19
Practical support (e.g. home help) 27 5
Contact / key worker visits 48 8
Symptom management 17 7
Leisure and sport activities 51 3
Wish granting 13 3
Holidays 23 2
Grants and financial assistance 29 3
Financial and benefits advice 31 2
Equipment and adaptations 26 0
Transport 26 2
Parent support group / network 51 7
Befriending 22 4
Signposting 79 9
Training and education for staff 53 3
Physiotherapy 18 2
Psychological therapies / counselling 19 2
Play therapy 23 3
Complementary therapies 14 3
Music therapy 12 3
Occupational therapy 7 1
Hydrotherapy 9 2
3.6 Making Use of the Mapping and Survey Data
The aim of the mapping and survey part of the project was to collect key information about the
range and type of services available to children and young people in Yorkshire and the Humber that
could help towards ensuring they receive appropriate paediatric palliative care. As well as expanding
current knowledge about what is available, the information collected from services was to be used
to create an online service directory that could be made available to families and service providers.
This was felt to be important by the majority of service providers and families involved in the
project, in recognition that obtaining information about what is available and from where is a key
barrier to access.
Although the process of mapping services confirmed this to be the case, it also revealed the inherent
difficulties in maintaining a ‘comprehensive directory’ with limited resources, whether or not service
providers can update their details online to reduce the burden on any one organisation. The
complexity and variability of provision; the unsustainable funding arrangements for some
organisations; service changes, including type of support provided and name of service; and
outdated information contained on service websites, were also identified as barriers to maintaining
a comprehensive directory of both national and regional organisations available to families living in
Yorkshire and the Humber.
One of the key recommendations for paediatric palliative care in the region is to establish specialist
care co-ordinators or key workers for children and young people with life-limiting conditions and
their families. The information collected as part of this research could become an invaluable
resource for individuals involved in helping to assess and co-ordinate families’ care and can be more
easily updated as part of a co-ordinating role. A user-friendly database in Excel has therefore been
produced that contains key information about each of the services identified. This database includes
data collected as part of the survey that services agreed could be made publicly available. A
summary sheet (see sample in Appendix L) has also been produced for each service taking part in the
survey containing a description of the service and key acceptance criteria.
3.6 Key Summary Points
Identifying services in the region was an arduous and time-consuming task. The internet was a
useful resource, but locating services required input from paediatric palliative care and other
frontline staff; service directories; organisations involved in sign-posting and providing
information; and families themselves. It was particularly difficult to locate NHS and Local
Authority services, who in some cases were also difficult to make contact with.
The mapping exercise identified core services within most areas, and a combination of public,
private and voluntary sector organisations. The proportion of services provided by voluntary
sector organisations was significant, which raises implications for the sustainability and equity
of paediatric palliative care over the long-term. There were also a significant proportion of
Page | 45
local authority providers. This raises questions about the value of some the provision identified
considering the findings in previous research that local authorities are not always a useful
resource for families.
Some organisations provided a very specific service and served a very small local area, and
finding out about them required the knowledge of families and professionals who had become
aware of them. However, many of the charities were national, supporting different groups of
children and families across the UK, and having a significant online presence.
The survey identified limited provision of specialist end of life care and bereavement services,
and other key support that families in the region would benefit from.
The survey identified a range of barriers to accessing services. These included, differing referral
criteria (e.g., age, condition, medical needs); short opening hours; limited transport and
translation arrangements; service charges; difficulties supporting children with complex care
needs; and waiting lists.
One of the main barriers to access relates to the difficulty of knowing what support is available
and from where. It is quite likely that there are key services missing from this database of
provision. However, this data provides a good indicator of the provision available to families in
Yorkshire and the Humber, and could be used by the funding organisation to help maintain a
comprehensive database of the provision available.
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4 PROJECT FINDINGS – VIEWS OF PARENTS AND PROFESSIONALS
4.1 Introduction
This section summarises the main themes discussed by parents and professionals (including key
informants) who were interviewed as part of this research. The discussion focuses on the findings as
they relate to the main barriers to and facilitators for ensuring families can access appropriate and
timely paediatric palliative care. Due to the overlapping themes and the consistency between the
accounts of parents and professionals about what the barriers and facilitators are, the findings are
presented together. Quotations are included to illustrate and explain key points. Names have been
changed to protect the identity of participants, and certain professionals are not quoted due to the
ease with which they could be identified by others working in paediatric palliative care who may also
read this report.
4.2 The Key Role of Specialist Paediatric Palliative Care
High quality medical and nursing care that is available around the clock and provided by empathic
and knowledgeable healthcare professionals who take the time to get to know children and their
families is a crucial element of the overall care and support families are reported to need. As well as
reassuring parents that children are receiving high standards of care provided by clinicians
experienced in looking after children and young people with life-limiting conditions, these
professionals are often involved over a continued period, thereby providing families with continuity
of care and a key source of information and advice.
Specialist paediatric palliative care providers, which include children’s hospices and specialist
clinicians and nursing teams, are highly valued by families and other service providers, offering a
total approach to care from diagnosis through end of life and providing parents with key information
and knowledge about their child’s condition and the likely treatment, trajectory and prognosis. This
is especially important at times during which a child’s health has worsened or they have experienced
an illness or other significant health event. Having a trusted paediatric consultant or specialist nurse
to contact for on-going advice and information about the medical and nursing care required for their
child was also really important to parents.
However, there was a distinct lack of support available to families during evenings and weekends,
with many services operating during normal office hours. This included some children’s community
and specialist nursing services, which were identified by families as a key provider of care. Families
and staff identified the difficulties of accessing specialist medical and nursing care on evenings and
weekends as a barrier to effectively supporting children. Acknowledging the dearth in provision,
some families drew attention to the importance of continuing care provision, and the invaluable
advice and emergency care available from their children’s hospice.
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There was a concern among many staff and key informants that specialist end of life and
bereavement care is only provided by a small minority of services identified in the research.
Children’s hospices were identified as the primary provider of end of life care and bereavement
support in the region. Bereaved parents taking part described the support provided by their
children’s hospice at the end of life as invaluable. Some staff expressed concerns that families
without access to a children’s hospice at the end of life may not have the ‘good death’ that a
children’s hospice is reported to help provide.
Although specialist paediatric palliative care providers were identified as playing a central role in the
lives of children and their families, the term ‘paediatric palliative care’ itself was felt to act as a
barrier to access, with families sometimes taking a number of years to accept that their child has a
life-limiting condition, and therefore may benefit from the support offered by palliative care
providers. Staff involved in signposting families also expressed concerns about the term paediatric
palliative care and expressed uncertainties about when to introduce these services to families. The
time of diagnosis was not always felt to be appropriate, and several staff admitted that introducing
the idea of a children’s hospice or palliative care to families was not easy.
“It’s working out whether or not they [parents] can take that in at the time, I think that’s
probably what happens, because it’s sometimes people are bombarded or they feel…you
know when something awful is happening or something really difficult is happening to
take all that information in initially might be hard.” (Specialist Nurse)
4.3 The Importance of a Sustainable Home Life
Parents reminded us that their lives are based at home, and nearly all parents whose child had
disabilities or complex health care needs described the lengthy process of ensuring that their home
environment could cater for the needs of their child and family. Many parents had moved during
their child’s life or self-funded home adaptations over many years to achieve this. Others had
endured long drawn out battles with Local Authorities in order to secure the adaptations and
equipment that would enable them to effectively care for their child at home.
Parents described the additional burden of care from having to care for their child in a home with
limited space or access; poor adaptations for bathing and mobility; and limited equipment to help
deliver care and enable their child to enjoy sensory experiences and promote development. Parents
of very young children also identified the importance of having equipment that would keep their child
safe and comfortable, and provide meaningful experiences. For some families, a mobility car,
specially made wheelchair or buggy, or portable medical equipment were also viewed as central to
ensuring that children and their families could live a ‘normal’ family life.
Parents also talked about providing the best possible start for their child, and identified themselves
as the primary provider and carer. However, for parents of children with a life-limiting condition,
their capacity and ability to do this was at times impaired because of the daily and complex care
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their child required and the impact on parents of providing care over what can be many years.
Several of the parents who took part in this study were at ‘breaking point’, and nearly all parents
referred to times during which their own well-being and ability to care for their family was impeded.
During these times, parents reported unmet needs for care and support, uncertainty about which
professional would be able to assist them, and limited information about what was available and
how to access it. Accessing a children’s hospice or short break provider, or securing regular care
assistance at home were often important turning points for parents, as it provided them with a well
needed break from providing around the clock care for their child. Respite at home and away from
home was equally important. For families who accessed a children’s hospice, the planned stays
provided parents with time to rest and recoup while their children engaged in fun activities that they
sometimes missed out on at home. Many parents identified their children’s hospice as a key
component of the support they received. Some parents added that without the on-going support
available from their hospice and the relaxing breaks away from home, they would not be able to
cope with the daily pressures of caring for their child and family.
Although hospice care was broadly welcomed, for some parents a more regular break from daily life
was required and parents identified the importance of being able to access flexible and regular care
assistance at home, which enabled parents to attend to other family matters and members as well
as taking a break from caring.
Families explained that their needs for support differed depending on their own circumstances and
environment, as well as their child’s condition and associated symptoms. For parents, being in paid
employment; having extended family support and other children; being able to drive; household
income; housing tenure; adequacy of space and access at home; their own physical and emotional
well-being; and the relationship with their spouse or partner, were all identified to influence their
ability to maintain a sustainable home life, and therefore the type and amount of additional support
they required. Needs were also reported to shift over time as circumstances changed or when there
were significant events for a family, such as a divorce, pregnancy, or for parents the loss of their own
parents.
Whilst child and family circumstances meant that needs for care were variable, nearly all parents
welcomed the break they received as others helped to care for their child, both at home and in
places of respite or a children’s hospice. As parents discussed the central role of nurses and carers
who helped them at home, they revealed their concerns and fears about losing this provision, either
as an outcome of a new assessment of need carried out by their social worker, or as a result of a
trusted and flexible carer moving on to other work or another family. Mothers in particular were
acutely aware of how much they depended on this assistance, and the positive impact having a
trusted and flexible carer had on daily life for their ill child, for other children of the house, and for
themselves as parents.
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For parents whose ill child had difficulties sleeping, having some respite at home or away from home
was as crucial as the daily support provided by a carer. Sleep deprivation was identified by nearly all
parents as one of the most important factors that led to feelings of depression and of not being able
to cope, with several parents admitting that they were less patient and sociable with their ill child
and other children of the family during times of complete exhaustion.
“For a good year we were surviving on I don’t know three hours sleep each, something like
that. We would take it in turns and he might sleep three or four hours, that was it, an hour
here an hour there. And you are not doing anything or saying anything to him but your
mind is just God will you go to sleep… so there is never any respite there, the sleep was a
huge killer.” (Dad of Shane age 3)
For many parents, it was the combination of care at home and away from home that was the key to
helping families maintain a sustainable home life. Several of the staff interviewed were aware of
how important it was for parents to have some respite from caring for their child. However, not all
staff identified the importance of the combination of respite at home and away from home, and the
key role this played in helping families to have a good quality of life at home. Very few staff talked
about the importance of the home environment itself and the crucial impact this could have on
family life. It is possible that the palliative care and wider support needed for children whose illness
is life-limiting draws attention away from some of the fundamental needs that families with a
disabled child can have.
4.4 Building and Maintaining a Seamless Package of Care
Obtaining the right package of support is crucial in helping families function and lead ‘normal’ lives.
For some parents this took many years of hard work and persistence, whereas other parents
described it as more of a lottery. Essentially, parents viewed the whole package of care and support
as more than the sum of its parts. Some found it difficult to identify any one type of service as more
important than others. Families also lived in fear that the package of care they had spent many years
to build up could change for the worse. Some parents continued to have unmet needs that they
struggled to find the right support to address.
Families each had their own unique package of care and support, provided mainly by public and
voluntary sector organisations. The arrangements in place for paid carers tended to vary, with some
families using Local Authority provision; others using a private or voluntary care agency; and some
using their local contacts to identify potential carers who were already known to the child or who
were recommended to them. The financial resources available to families was also an important
factor in securing support, with some families having to rely entirely on the hours provided as part of
their care package, and others using their own money to pay for additional support.
Parents identified the importance of being able to access regular, flexible and high quality personal
and nursing care, both in the home and in other settings. However, this was reported as difficult to
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obtain, and was often provided by carers who worked outside of the responsibilities of their caring
role. Examples include, sitting with other children while they do homework; looking after children so
parents can go out or engage in paid work at home; household chores such as washing and ironing;
running errands and taking siblings to after school activities. For some parents, assistance for daily
life was as important as the care provided to their ill child. Having more flexibility about how support
and care are provided in the home is important to parents, and is one of the features about a
children’s hospice that parents valued so highly.
Continuity of care was also important, as it was reported to help carers and families establish a
trusted relationship. However, in reality the quality and continuity of care that children received was
variable with many families sharing their experiences of both poor and excellent care. Consequently,
the process of finding carers and service providers who supported both the child and family, and
who could work flexibly around family routines was identified as a challenge, with many parents
expressing anxieties about losing the valued support provided by a carer, nurse, respite provider, or
children’s hospice. Professionals also identified the variation in quality of care available to families,
and three social workers described the difficult process of sourcing appropriate carers for the
families they worked with.
Parents identified their children’s hospice as a key component of the support they received. Some
parents added that without the on-going support available from their hospice and the relaxing
breaks away from home, they would not be able to cope with the daily pressures of caring for their
child and family. Having regular breaks at a children’s hospice was reported to enhance quality of life
for children and young people because of the fun activities available, as well as easing the burden of
care placed on parents over what can be a period of many years. Parents also highlighted the
important role of their children’s hospice in meeting other needs, including the support available in
the event of an emergency or crisis, and the on-going advice and support provided in between stays
by staff of the children’s hospice team and the paediatric palliative care consultant.
Many key informants and frontline staff identified the central role played by children’s hospices. One
paediatrician discussed the unique position of children’s hospices as one of very few organisations
that offer the full range of services that fall under the umbrella of palliative care, and some staff
expressed concerns that more families were not currently supported in this way.
“It mainly gives them [families] a break from the usual daily grind and treatment and
they can come as a whole family, which is really unique. So the whole family can come
along and relax together and there’s somebody alongside them to help them care for the
child but also do all the daily things like the washing and cooking. So I think it offers an
oasis for them really.” (Paediatrician 1)
Parents highlighted the importance of social and leisure activities that their child could access on a
regular basis, and again children’s hospices were identified as an important resource for children and
young people for whom provision locally was limited. Some parents also described the important
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role of more specialised one off provision, such as wish-making foundations and holiday providers.
Although some parents described these as non-essential and expressed their gratitude for receiving
such support, they were nevertheless viewed as invaluable to enhancing their child’s quality of life.
It was clear from analysis of interview data that charitable and voluntary organisations provide
significant amounts of care and support to families, which includes in many cases information about
what families are entitled to; sign-posting to services and support that is available; and advocacy and
key-working for families. Much of the support available from the voluntary sector aims to help
ensure that families have the right support and care in place to enable them to live at home as
normally as possible, and minimise the burden placed upon the child and family by the condition and
associated symptoms and complexities. Both professionals and families talked about the role that
charitable and voluntary organisations also played in plugging the gaps in statutory provision, and
extending the support available to families.
Finally, some parents identified the key role played by their child’s special school, and identified this
as a pivotal turning point that eased the burden of caring for their child and helped to join up the
care their child required. Some of the special schools described by parents facilitated multi-
disciplinary appointments at school for children, and provided access to key therapies and support
that children with complex health care needs can often require. Specialist nursing support and carers
trained to support technology-dependent children were also available at some schools. The
combination of this support meant that many if not all of a child’s needs could be met at school.
From analysing family and staff accounts, the main components that make up a care package over a
child’s life-time were identified. These are summarised in Table 11.
Table 11: Main Components of Care for Children and Families
Main Components of Care Package for Children and Families
Access to specialist medical and nursing expertise and care around the clock
A care co-ordinator who works alongside families and has expertise in palliative care
Access to specialist end of life and bereavement care
Space and access for children to enjoy life at home
Facilities and equipment at home to effectively care for child
Transport and mobility for their child and family
Assistance with caring for their ill child and practical support for the family
For parents, a break from daily life (e.g. short break provision)
Emergency care and back-up when required
Financial support to pay for adaptations, equipment and care provision
Access to social and leisure activities that cater for children’s needs
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A break for the whole family that enables family members to enjoy life together and
individually (e.g. planned hospices stays)
Accessible information about child’s condition and prognosis
Information, advice and advocacy regarding access and entitlement to support
Access to range of therapies to support multi-faceted needs of child
Emotional support and the opportunity to meet and talk to other families
Access to a good special school with links to health and social care
4.5 Assessing and Responding to Need
Parents and staff identified the needs assessment carried out by a social worker as both a barrier
and facilitator to securing support. While some parents identified their social worker as an important
resource and gatekeeper to care, other parents were less positive, describing instead the constant
battles with their local authority in order to secure increased hours of care, or funding for
adaptations and equipment. Many parents felt that their social worker lacked experience of
supporting children with life-limiting conditions and had little understanding of paediatric palliative
care. Social workers confirmed that this was sometimes the case, and expressed a desire to learn
more about how to effectively support families.
For some parents, the support and advice provided by a social worker who was able to navigate the
system and apply a holistic and flexible approach to assessing a family’s needs was identified as
invaluable. However, in many cases the social care system was viewed as bureaucratic, unhelpful,
judgemental, and lacking the knowledge and understanding of what life is like for families of life-
limited children. A small number of parents expressed the opinion that despite their obvious needs,
their social worker assessment had been underpinned by principles of child protection, with
outcomes based on whether or not parents were providing sufficient standards of care. Among
some of those parents, their case had been closed following an assessment that concluded they
were coping well.
Some parents were uncertain as to whether they still had a social worker or if they were entitled to
one. Among those parents, several were not sure who they would contact if they needed help from
social services or how to go about accessing the support they needed. This problem was confirmed
by staff from voluntary and healthcare providers who had supported families with no named social
worker or difficulties in having their needs met as part of a social care assessment. Some staff, like
parents, referred to the problem that since social services have become more independent and
focused around issues of child protection, their role in supporting children with life-limiting
conditions has become less prominent.
The social care system itself was identified as inequitable, with families comparing the support they
were offered to the support that other families they knew with a life-limited child had received as
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part of their allocated package of care. For example, many parents drew attention to the differing
number of hours of care offered following an assessment, both between families and also over time
as assessments of need were reviewed. Parents and a number of professionals who were
interviewed highlighted the inequity and lack of transparency in social care as a key barrier to
achieving the support children and their families required.
Parents and staff talked about the gulf between health and social care, which for some of the staff
interviewed was felt to have widened because of recent structural and organisational changes in the
NHS. The separate funding for services to meet what can be defined as either a health or social need
was believed to act as a barrier to effectively supporting families. This was identified by several staff
as a growing problem in practice due to budgetary constraints and changing criteria for meeting
need. Some of the families taking part also drew attention to this issue, providing their own
accounts of the difficulties they had experienced in accessing particular services or support because
of the refusal of both the NHS (health) and Local Authority (social) to cover the cost.
There was a shared opinion among many of those interviewed that assessments of need cannot be a
single event or a paper-ticking exercise carried out by a single professional or organisation. A
common thread within interview data was that that getting the right support in place for a family
takes time, sometimes years. For some families this was felt to be appropriate, because needs
tended to increase as their child grew and became more difficult to look after alone. However for
other families, the point at which support was granted or sought came at a time when parents were
struggling to cope. While many parents observed a more joined-up and multi-disciplinary approach
to assessing need than was the case in the past, a number of parents described recent assessments
that continued to suffer from the barriers identified here.
The growing expertise and knowledge about how to effectively manage certain life-limiting
conditions and about the phases and stages that many children and young people may live through
was identified as important information that could be used to help predict and assess needs as they
emerged. However, the varied understanding across the range of organisations involved in
supporting families was identified as a barrier to achieving this in practice.
Some families and professionals referred to the categories used to define children as life-limiting as
providing useful information for assessing need. However, although these categories were well
regarded in the paediatric palliative care community, there was some disagreement about the
inclusion and / or exclusion of certain conditions. For example cystic fibrosis is included but some
professionals interviewed argued that this should now be viewed as a chronic condition due to the
vastly improved prognosis in the majority of cases. The children in Category 4 also caused
disagreements, particularly when services have to decide whether or not a child’s disabilities carry
with them the likelihood of a shortened life. It was reported to be difficult to offer a certain
prognosis for these children, yet the severity of their disabilities meant that they often required
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around the clock medical and personal care. This could mean that some children with very similar
needs would have access to different types of support.
“There are more people would like to use here [children’s hospice] than can … because I
know some people who would really like to use it but they can’t quite understand why
they’re not in the category [4]…that’s quite hard now for the doctors to decide upon.”
(Key Informant)
4.6 Co-ordinating Care
From analysing families’ accounts, the involvement of one service or professional who acted as a co-
ordinator of care for families was the single most important factor that helped to secure the care
and support children and their families required. This was sometimes a child’s paediatrician,
community nurse or social worker, but it could also be an allied healthcare professional, a child’s
special school, a service manager, or a children’s hospice. An effective co-ordinator of care also
helped to predict future needs a family might have, thereby preventing families reaching breaking
point and enabling parents to effectively care for their child and family.
“It was the first time any help had been offered. But it was only because of this particular
person. She was the sort of person that was interested and that’s why…It wasn’t offered
to us through the health services. But then we didn’t have much contact with the health
service.” (Mother of Debbie, age 21)
Families without a care co-ordinator who acted on their behalf to ensure that parents were directed
to the care and support they required were reported to have unmet needs and limited information
about how to access support. Consequently, these parents found it extremely difficult to put into
place a package of care around them. Without a gatekeeper or key worker, this process was
frustrating and time-consuming for parents, placing families under additional pressure as they
struggled to find out what was available and how to access it.
Many of the parents who had received this type of support realised how lucky they had been
compared to other families, and expressed gratitude that these individuals had been willing to go
above and beyond what was expected of them to provide informal out of hours care; personal
mobile numbers in case of an emergency; and advocacy and gatekeeping on behalf of families in
order to access services and support that was needed. Some of the staff interviewed drew attention
to the unpaid and invisible work carried out by passionate and committed individuals, and while the
motivation of these individuals was highly commended there were concerns about the sustainability
of this additional care provided to families when it was not part of any formal offer of support, or
hidden from the service as a whole.
Supporting families and helping them to ask for help was identified as a key facilitator for assessing
need in a more timely fashion. Some parents reported that having a trusted relationship with a
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professional that would act as gatekeeper and advocate on their behalf encouraged them to ask for
help and be honest about any difficulties they were experiencing. However, many parents who were
interviewed reported finding it very difficult to ask for help, particularly as new parents and during
the early years. Parents reported a range of emotions around this issue including, feeling like a
failure as a parent; having to admit that they are not coping; accepting that their family needs help
to function; acknowledging the severity of their child’s condition; and issues around privacy and
family.
“I’ve gone through lots of counselling as well because it’s difficult to accept sometimes. I
don’t know if I’m still all right but I’m trying to be strong for them, because that’s the
only thing that we can do.” (Mother of Freddie, age 10)
4.7 The Key Role of Information
From the accounts of families, key informants and frontline health and social care professionals, the
process of identifying and accessing services was fraught with difficulties, meaning that some
families were not able to access care and support that was available to them, but because of the
difficulties in identifying services and determining whether or not a particular family was able to
access the service or would be eligible, had unmet needs.
For parents, information was identified as one of the key resources they draw upon to help them
cope with their child’s diagnosis; to learn more about how to effectively care for their child; and to
access the support they need. Professionals and organisations that were able to quickly signpost
families to other services when a problem occurred, or when a new need became apparent, were
highly valued.
However, many families and staff identified this as a gap in provision that needed to be addressed,
and identified a need for better information about all aspects of caring for a child with a life-limiting
condition, and about the support that is available and how to access it. Staff, parents and young
people found the process of identifying what support is available as an on-going challenge and a key
barrier to securing care and support that is needed.
The lack of a shared language across the range of organisations involved in supporting families, and
misunderstandings and differences in opinion about the terms ‘life-limiting’, ‘palliative care’ and
‘children’s hospice’ meant that in practice, there were uncertainties about which children should be
supported by whom, and at what stage in their life.
Families of children without a diagnosis and those with complex healthcare needs that were difficult
to define as ‘life-limiting’ were reported to receive less care and support due to the restrictive
referral criteria of some services. This was seen in contrast to the clear pathways and funding
mechanisms for certain condition types including paediatric oncology centres for children with
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cancers, and a specialist regional neuromuscular centre for children with conditions such as
Duchenne muscular dystrophy.
Families who had access to a specialist palliative care provider such as a children’s hospice or
specialist nursing service identified them as a key source of information. ‘Enablers’ of care were also
identified as an important resource, as were national charities, both condition-specific and generic.
However, families and staff were not always aware of the support available from national charities,
despite them being identified as a key resource.
Finally, other families were identified by nearly all parents and many of the staff interviewed as
important sources of information and advice. Children’s hospices and national organisations were
identified as key facilitators for families to make contact with other families of children with life-
limiting conditions, with the latter hosting events; creating online forums, publishing regular
newsletters; and setting up parent groups.
4.8 Transition to Adult Services
The transition to adult services was identified as a time during which young people and parents
could lose vital care and support. The lack of equivalent adult services, the different funding and
transport arrangements, and the limited knowledge in adult health and social care about childhood
life-limiting conditions, were identified as barriers to effectively supporting young adults.
The limited opportunities for young people to engage in social and leisure activities was identified by
staff and parents as a key concern, with some young adults spending the majority of time at home
once leaving school or college.
Parents of children as young as seven were already worried about the transition to adult services
and what this would mean for their child and family. Key decisions about schooling and where to live
also took into account how this might benefit children and their families as they approached the
transition to adult services.
4.9 Barriers to Equity and Access
Families and staff reported significant variations in the care and support offered to different families,
even among those whose child had the same condition and similar needs. Many parents interviewed
reported that the package of care they had in place was just right, providing them with the resources
and energy they needed to effectively care for their child, be a parent to their children, and live a
‘normal’ family life. Other parents identified unmet needs but explained that they had sufficient
support in place for their family to function on a daily basis. However, a few parents were at
‘breaking point’ and became very distressed as they described the limited support they received
from others, and expressed uncertainty about who to ask for help.
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From this research, it was clear that some of the gaps in provision identified by families were met
informally by individual professionals and frontline staff from health, social care, education, and
charitable organisations, and also paid carers. These individuals were willing to step outside of their
professional boundaries or the boundaries governing their role in order to address unmet need, or
to bend the referral criteria in order that families who were unlikely to find another service
elsewhere could be supported.
However, there were many factors identified to contribute to the perceived gaps in provision.
Although it was reported by many staff and families that greater provision of specialist palliative care
services and high quality care provision to support parents at home is required, many of the barriers
relate to identifying and accessing what is already available. From the analysis of parent and
professional accounts, Table 12 summarise the main barriers to equitable provision of paediatric
palliative care.
Table 12: Barriers to Accessing Paediatric Palliative Care Barriers to Accessing Paediatric Palliative Care Parents not being able to recognise or accept that they need help
Parents’ reservations about accessing certain services, e.g., children’s hospices
Difficulties accepting the transition from curative / investigative to palliative care, and misunderstandings
among parents and professionals about what palliative means
Negative perceptions and attitudes towards the role of social workers, and the
needs assessment process
Assumptions made by professionals about the needs of different families
Being subject to a poor assessment of need or not having a named social worker
Not having a dedicated care co-ordinator acting on behalf of child and parents
The differing awareness and limited information about the range of services that are available and how
to access them
The assertiveness and persistence of some families in accessing services
The changeable nature of provision due to short-term funding arrangements, and changes to policy and
practice
Differing provision across and within localities, and varying referral routes and criteria
The varied financial resources and benefits available to families
The division between health and social care, and the different funding mechanisms for each system
The comprehensive support provided to families who access a children’s hospice or special school
Limited support for certain categories of children, including children with undiagnosed conditions;
children with conditions that are difficult to define as life-limiting; children with behavioural difficulties;
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children with very complex healthcare needs and technology dependencies; infants and very young
children; and young adults.
The lack of a shared language and understanding about key terms, including ‘paediatric palliative care’,
‘children’s hospice’ and ‘life-limiting’
Limited availability of high quality short break providers and paid carers
Lack of specialist medical and nursing care during evenings and weekends
The hidden and informal care provided by some professionals to some families, leading to inequity in
provision
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5 PROJECT FINDINGS – VIEWS OF YOUNG PEOPLE
5.1 Introduction
This section reports the main themes discussed by young people who took part in the focus group
and individual interviews. Despite the different methods of data collection, the central themes
discussed in the focus group and in individual interviews were strikingly similar. Consequently, the
findings are presented together, thereby representing the views of 12 young people with life-limiting
conditions. Quotations are used to illustrate key points, and names have been changed to ensure
the anonymity of participants is upheld.
5.2 Identifying Provision
Young people’s discussions centred on provision rather than need. However in discussing the
organisations and services involved in their life, the importance and relevance of different provision
and the benefits derived from them were revealed. Unlike parents, whose narratives represented a
journey of on-going negotiations and frustrations in building appropriate support into their lives,
young people tended to focus on provision in the present. They each identified a whole range of
services that were involved in supporting them on a regular basis and other services they accessed
less frequently, as well as some that they had accessed in the recent past. Young people also
identified other services they were aware of, and that they felt might be useful for children and
young people with life-limiting conditions but had not accessed for themselves.
One of the striking observations within the data was that the majority of services identified and
discussed by young people were provided by voluntary and charitable organisations. These included
condition and impairment specific charities; national and local charities supporting people with
disabilities and complex needs, as well as those specifically supporting children with life-limiting
conditions; children’s hospices; and other local charities and organisations providing a range of
social, leisure, and activity-based provision that young people had accessed, or were aware of.
The main types of support identified by young people during the focus group and individual
interviews were: paid care; children’s hospice and short break provision; and social and leisure
activities. Young people also identified the importance of information and sign-posting services,
benefits and funding, and transport provision. These were crucial in helping young people to identify
and access the services that were available, but could also act as barriers when they were not
available themselves.
5.2.1 Paid Carers
The important role that carers play in young people’s daily lives was evident from both the focus
group discussion and from individual interviews, with three of the four young people interviewed
having a personal assistant or carer. For young people, having a carer enabled them to become more
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independent and engage in more activities outside of the home, especially if their carer could double
up as a driver. Some young people also spoke about the friendship they had formed with their carer,
and the important social aspect to this provision.
“You can still have good life. You’re not stuck doing less things…except from flying and
things like that, but apart from that, I mean you can travel round the country in vehicles
easy. I need a carer there nearly all the time but that’s OK. We have a laugh anyway so
it’s fine.” (Paul, age 23)
However, not all young people required the assistance of a carer or identified this as important to
them. For example, two young adults had no mobility impairments and were able to manage their
daily personal care. Other young people continued to depend on their parents for daily assistance
and for transporting them to school, college or other places they visited.
5.2.2 Social and leisure activities
Young people spoke a lot about social and leisure activities, with many commenting that there was a
lack of provision for young people with complex health care needs and disabilities, particularly once
they made the transition into adult services. The services identified included youth clubs,
befriending groups, drama and art, sports, swimming, and organised trips. These types of services
were prioritised by young people, because they enabled them to take part in activities they enjoyed,
to play an active role in life outside the home, and to meet and socialise with other young people.
Among the young people who spent time at a children’s hospice, the opportunity to engage in social
and leisure activities, to interact with other young people, and to go on organised trips to the cinema
or to other places, was one of the key highlights of a stay.
“When I was 16/17 and I was going it was nice because I would go out shopping and I
wasn’t with mum and I would go out to the cinema … So it was just nice to do all these
things, you do normal things and sometimes you can do well the ordinary things
there. They organise all sorts don’t they but it is just nice to do it sort of independently
as you can.” (Debbie, age 21)
For one young person, staying at his local children’s hospice was one of very few opportunities
available that enabled him to spend time with other young people and to engage in activities outside
of the home, now that he had left college.
Hydrotherapy was also highlighted as an important service for some young people, and although it
was identified as a health-related therapy, it was also described as a leisure activity and
something that young people enjoyed.
5.2.3 Children’s hospice and short break provision
All the young people in the focus group and the two interviewees who were hospice users
emphasised the important role of their children’s hospice, and the enjoyment they had and
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continued to receive from their stays. As well as engaging in social and leisure activities, being able
to spend time away from the home and family; to have freedom of choice over daily routines and
activities; and to spend time with other young people, were identified as key benefits. For some
young people, having a good relationship with staff was also important and provided an important
source of advice and support on various aspects of life.
“I mean they do have people there who have obviously got a lot of knowledge on things
and it is nice if you ever have any questions about something like there is somebody
there who is really good about gastrostomies and everything.” (Andrew, age 19)
Other providers of respite and short breaks were highlighted as important as well, and one young
person made reference to the break it provided his parents. However, Martin House and other
children’s hospices were compared positively to the more standard providers of respite because of
the array of activities available to them during their stays, the informal and relaxed atmosphere, and
the relationships they had developed with staff over the years.
5.3 Barriers to Access
Young people were asked about any difficulties they had experienced in obtaining the support they
might need and in accessing the services that were available. Cost, transport, and availability were
identified as key barriers, and were reported to pose a greater significance once young people made
the transition to adult services. Having the right information was identified by young people as the
key driver towards overcoming these barriers, and despite all young people having online and offline
resources to draw upon to obtain information, it was still felt that finding out what was available and
how to access it, as well as the funding and benefits that might be available, was a difficult and time-
intensive activity.
5.3.1 Benefits, funding and cost
The cost of service provision and respite was identified as a potential barrier for young adults
because of the change in funding arrangements once they made the transition from child to adult
services. This was one of the main barriers to accessing services identified in the focus group, and
was also discussed by some of the young people interviewed. One young person talked about this
issue in relation to respite, emphasising the point that for him the cost of respite had to be paid from
his benefits or personally, with children’s hospices identified as the exception to this rule.
Three young people identified the key role of direct payments and viewed the process of assuming
responsibility for their own package of care from their parents as an important step towards greater
autonomy. This enabled young people to choose the care and services they wished to access, and
enhanced feelings of independence and freedom of choice.
Funding was also identified as a barrier to accessing services, with some young people having
accessed services only for them to have ended or changed due to short-term funding arrangements.
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Many of the local organisations accessed by young people were charities and voluntary groups.
Several young people identified the risks posed by short-term funding or for some services, from
having to rely on donations or fundraising to generate income.
5.3.2 Transport arrangements
Having access to appropriate transport was identified as a crucial element in the provision of care
and other services. This was identified as both a facilitator and a barrier to accessing services. Some
of the young adults had a paid carer who used the family mobility car to transport them. For others,
parents were the main provider of transport to and from services they wished to access. One young
adult with no mobility impairments used public transport on occasion, although continued to rely on
her parents for lifts. However, some young people had to organise transport to and from home
because their parents did not drive, or for some because they lived apart from parents. This was an
additional burden for young people, and an additional cost that had to be managed. It also meant
that sometimes transport could not be arranged, and certain events or activities had to be missed.
Distance was also felt to prevent participation in certain services, although as one young person in
the focus group pointed out this can depend on how much you want to be involved in that activity.
For some young people, the distance to their children’s hospice was felt to limit opportunities to visit
and was identified as a long way to travel. Some young people expressed a need for more services
closer to home. However, other young people expressed having no problem with travelling across
the region to access services that were so valuable.
5.3.3 Availability and access
Young people provided examples of excellent provision that catered for their needs. However, they
expressed the opinion that more could be available, particularly in relation to social and leisure
provision. Young people in the focus group also identified the short-term funding of many services
and the heavy reliance on the voluntary sector as impacting on availability, expressing their
disappointment about the excellent services that had come to an end because of limited funding.
Additionally, the transition to adult services was believed to reduce the number of services available,
with many of the services that young people discussed having an upper age limit for referrals and
access.
During the focus group, young people discussed the different impairments and care needs they had,
and came to the conclusion that not all services were felt to be accessible to all, or in some cases
relevant or desirable. For example, one young person reported limited benefits from provision that
catered specifically for children with complex healthcare needs and mobility impairments, and
identified a lack of social provision for young people who were physically able but had a life-limiting
condition. Young people who took part in an interview also identified the variation in provision and
the difficulties locating services that they would benefit from and that would be able to support their
healthcare needs.
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Some young people highlighted the difference between availability and access, pointing out that
while there are some gaps in local provision one of the key barriers to accessing services is the
difficulties of finding out what was available. Many of the young people provided examples of
suddenly ‘finding out’ or ‘coming across’ particular services that they could access and that provided
invaluable support.
“I know we hadn’t heard of it before and we didn’t really know. I don’t know if mum did
but I certainly didn’t know that there was somewhere to go like that around here or
actually existed to be honest.” (Tracey, age 19)
Identifying provision was viewed as an on-going challenge for young people, who identified a range
of resources they drew upon to locate services that they needed or would like to access. The
different sources of information identified by young people are listed in Table 13.
Table 13: Sources of information about service provision
Sources of information about what services are available
Parents
School or college
Word of mouth, i.e. other young people
Charity magazines (e.g. Muscular Dystrophy Campaign magazine)
The internet (e.g. charity websites / social networking sites / forums)
Children’s hospice staff and families
Paid carers and staff from other service providers
Local authorities (e.g. adult education; leisure provision)
5.4 Comparing the Accounts of Young People and Parents
Unlike parents, young people did not emphasise the importance of others in helping them to access
care and support, although they did identify others as useful sources of information about what was
available. They also focused primarily on the care and support that provided assistance for daily
living; short breaks and respite; and services that enabled them to engage in social and leisure
activities, and to meet and interact with other young people.
Young people did talk about school or college, and the medical or nursing care they received.
However, this was not explicitly discussed in relation to services they accessed that made a
difference to their lives. In contrast, parents identified special schools as an important element of
provision, and talked about the importance of their child’s hospital or community paediatrician, and
for some the nursing care that formed part of the package of support they received.
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The role of statutory social care providers was also missing from the accounts of young people, with
only one very informed young adult referring directly to the role of social workers. However, several
young people talked about the importance of funding and the key role of direct payments and
personalised budgets in helping them to access the daily assistance they required. Again, this was
seen in contrast to parents, who viewed the role of social workers as crucial because of their
influence over the provision of social care a family might receive following an assessment of need.
Both young people and parents identified the transition to adult services as a pivotal turning point
that could lead to a loss in support due to different funding arrangements and less availability of
provision. Young people and parents were also united about the importance of having better
information about the range of services that are available, and about the funding and organisations
that can help them access the right care and support.
Finally, young people like parents express the importance of being able to live a ‘normal’ life. They
also talk about the importance of spending time with other young people and engaging in activities
that their peers without a disability or illness can take for granted.
“I hang out with my friends a lot we just hang around at each other’s houses or whatever
and usually watch a bit of telly on Saturday nights and stuff….We like going to the
cinema a lot and I go to concerts a lot. That is kind of, I love music so I am always going
to gigs and concerts.” (Debbie, age 21)
This is echoed in parents’ accounts, who also want their child to be able to do this. Having access to
the funding, transport and environment that makes this possible is therefore crucial.
Overall, the support that young people and parents found the most important differed. Young
people required highly specialised medical and nursing care, but in the main wanted to access
services that would enable them to have fun, engage in social and leisure activities, and interact with
other young people. Parents wanted this for their children too but they also required support for
themselves so that they could be a parent to their child and other children in the family as well as a
carer of their ill child. Although the shift towards placing the child at the centre is an important
development in healthcare more broadly, the needs of parents, as primary nurturer, provider and
carer of their children, need also to be placed at the centre.
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6 SUMMARY OF KEY FINDINGS
1. Identifying services in the region was an arduous and time-consuming task. The internet was a
useful resource, but locating services required input from paediatric palliative care and other
frontline staff; service directories; organisations involved in sign-posting and providing information;
and families themselves. Staff, parents and young people also found the process of identifying
what support is available as an on-going challenge and a key barrier to securing care and support
that are needed.
2. The study confirms that a significant proportion of services are provided by voluntary sector
organisations, offering a wide variety of services. Some organisations served a very small local area,
and finding out about them required the knowledge of families and professionals who had become
aware of them. However, many of the charities were national, supporting different groups of
children and families across the UK, and having a significant online presence. However, families and
staff were not always aware of the support available from national charities, despite them being
identified as a key resource for some parents and young people.
3. The survey identified a range of barriers to accessing services. These included, differing referral
criteria (e.g., age, condition, medical needs); short opening hours; limited transport and translation
arrangements; service charges; difficulties supporting children with complex care needs; and waiting
lists. Families and staff also identified differing referral criteria between service providers as a key
barrier to securing support. The short-term funding and continuous changes in both the statutory
and voluntary sector were identified as an additional barrier to effective paediatric palliative care.
4. The lack of a shared language across the range of organisations involved in supporting families,
and misunderstandings and differences in opinion about the terms ‘life-limiting’ and ‘palliative
care’ meant that in practice, there were uncertainties about which children should be supported
by whom, and at what stage in their life. Families of children without a diagnosis and those with
complex healthcare needs that were difficult to define as ‘life-limiting’ were reported to receive less
care and support due to the restrictive referral criteria of some services.
5. There was a distinct lack of support available to families during evenings and weekends, with
many services operating during normal office hours. This included some children’s community and
specialist nursing services, which were identified by families as a key provider of care. Families and
staff identified the difficulties of accessing specialist medical and nursing care on evenings and
weekends as a barrier to effectively supporting children. Acknowledging the dearth in provision,
some families drew attention to the importance of continuing care provision, and the invaluable
advice and emergency care available from their children’s hospice.
6. Specialist end of life and bereavement care is only provided by a small minority of services
identified in the research. Children’s hospices were identified as the primary provider of end of life
care and bereavement support in the region. Bereaved parents taking part described the support
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provided by their children’s hospice at the end of life as invaluable. Some staff expressed concerns
that families without access to a children’s hospice at the end of life may not have the ‘good
death’ that a children’s hospice is reported to help provide.
7. Families each had their own unique package of care and support, provided mainly by public and
voluntary sector organisations. The arrangements in place for paid carers tended to vary, with some
families using Local Authority provision; others using a private or voluntary care agency; and some
using their local contacts to identify potential carers who were already known to the child or who
were recommended to them. The financial resources available to families was also an important
factor in securing support, with some families having to rely entirely on the hours provided as part
of their care package, and others using their own money to pay for additional support.
8. Families and staff reported significant variations in the care and support offered to different
families, even among those whose child had the same condition and similar needs. The factors
identified to contribute to this included: differences in local provision; variation in needs assessment
processes; assumptions made by professionals about the needs of different types of families;
parents not being able to recognise or accept that they need help; parents’ reservations about
accessing certain services, e.g., children’s hospices; assumptions made by parents about the role of
social workers, e.g. focus on child protection. Staff and parents also observed variation between
families with and without access to a children’s hospice or special school, both of which were
identified as key providers of care.
9. Parents and young people identified the importance of being able to access flexible and high
quality personal and nursing care, both in the home and in other settings. Continuity of care was
also important, as it was reported to help carers and families establish a trusted relationship.
However, in reality the quality and continuity of care that children received was variable with many
families sharing their experiences of both poor and excellent care. Consequently, the process of
finding carers and service providers who supported both the child and family, and who could work
flexibly around family routines was identified as a challenge, with many parents expressing anxieties
about losing the valued support provided by a carer, nurse, respite provider, or children’s hospice.
10. Many parents interviewed reported that the package of care they had in place was just right,
providing them with the resources and energy they needed to effectively care for their child, be a
parent to their children, and live a ‘normal’ family life. Other parents identified unmet needs but
explained that they had sufficient support in place for their family to function on a daily basis.
However, a few parents were at ‘breaking point’ and became very distressed as they described the
limited support they received from others, and expressed uncertainty about who to ask for help. In
fact, nearly all parents described having been in crisis at varying points in their child’s life. Securing
appropriate care and support was sometimes the only means by which families were able to
recover from this.
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11. Parents need a break from daily life and from providing around the clock care for their child.
Respite at home and away from home was equally important. For families who accessed a
children’s hospice, the planned stays were an essential part of their care package, providing parents
with time to rest and recoup while their children engaged in fun activities that they sometimes
missed out on at home. Young people also viewed stays at a children’s hospice and other short
break providers as important, because it enabled them to live more independently, adopt their
own daily routine, and spend time with other young people.
12. Families and staff identified the needs assessment carried out by a social worker as both a
barrier and facilitator to securing support. While some parents identified their social worker as an
important resource and gatekeeper to care, other parents were less positive, describing instead the
constant battles with their local authority in order to secure increased hours of care, or funding for
adaptations and equipment. Many families felt that their social worker lacked experience of
supporting children with life-limiting conditions and had little understanding of paediatric
palliative care. Social workers confirmed that this was sometimes the case, and expressed a desire
to learn more about how to effectively support families.
13. Families have different needs for support depending on their own circumstances and
environment, as well as their child’s condition and associated symptoms. For parents, being in paid
employment; having extended family support and other children; being able to drive; household
income; housing tenure; adequacy of space and access at home; their own physical and emotional
well-being; and the relationship with their spouse or partner, were all identified to influence the
type and amount of support required. Needs were also reported to shift over time as
circumstances changed or when there were significant events for a family, such as a divorce,
pregnancy, or for parents the loss of their own parents.
14. For parents, information was identified as one of the key resources they draw upon to help
them cope with their child’s diagnosis; to learn more about how to effectively care for their child;
and to access the support they need. Professionals and organisations that were able to quickly
signpost families to other services when a problem occurred, or when a new need became apparent,
were highly valued. However, many families and staff identified this as a gap in provision that
needed to be addressed, and identified a need for better information about all aspects of caring for
a child with a life-limiting condition, and about the support that is available and how to access it.
15. The transition to adult services was identified as a time during which young people and
parents could lose vital care and support. The lack of equivalent adult services, the different funding
and transport arrangements, and the limited knowledge in adult health and social care about
childhood life-limiting conditions, were identified as barriers to effectively supporting young adults.
The limited opportunities for young people to engage in social and leisure activities were identified
by staff, parents and young people as a key concern, with some young adults spending the majority
of time at home once leaving school or college.
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16. Obtaining the right package of support is crucial in helping families function and lead ‘normal’
lives. For some parents this took many years of hard work and persistence, whereas other parents
described it as more of a lottery. From analysing families’ accounts, the involvement of one service
or professional who acted as a co-ordinator of care for families was the single most important
factor that helped to secure the care and support children and their families required. This was
sometimes a child’s paediatrician, community nurse or social worker, but it could also be an allied
healthcare professional, a child’s special school, a service manager, or a children’s hospice. An
effective co-ordinator of care also helped to predict future needs a family might have, thereby
preventing families reaching breaking point and enabling parents to effectively care for their child
and family.
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7 IMPROVING PAEDIATRIC PALLIATIVE CARE
– RECOMMENDATIONS FOR MARTIN HOUSE
The first key message from this project is that with the right resources and support to draw upon,
the quality of life for children and young people with life-limiting conditions, and that of their
parents and other family members can be enhanced.
The second key message is that while there are gaps in provision, there is a whole range of both
regional and national services available to families, many of which are well regarded by families
and professionals alike.
The third key message is that despite increased knowledge from research and practice about
families’ needs, many families are subject to poor assessments and experience little co-ordination
of care. Consequently, whilst some families are able to access a range of resources and service
providers to help them establish a sustainable home life and achieve a good quality of life, other
families continue to fall through the gaps and will reach ‘breaking point’ before the process of
building effective care around them can begin.
Martin House was identified as a key provider of care for families in the region and an exemplar for
what excellent paediatric palliative care looks like. However, Martin House is not expected to
provide the full range of support a family might need, and families very much view Martin House as
one among many services they access, albeit a central one. Many of the parents and staff who were
interviewed expressed strong views that additional services were required and at an earlier point in
families’ lives in order that the right care and support can reach families before they are in crisis. The
hidden and informal care provided by professionals who worked outside of their contractual
arrangements to support families also helps to illustrate the pressure on the current system to
effectively care for children. Families and staff known to Martin House also expressed concerns that
if Martin House were to become a larger children’s hospice, it could lose the personal and holistic
care it provides families and reduce the capacity it currently has to respond effectively to their
changing circumstances.
The following point was made in the service evaluation report:
“Due to the close relationships Martin House forms with families using the service, which
can span many years, the organisation is also in a good position to help identify the
wider palliative care needs of children and young people and their families, and to share
this knowledge in a way that better informs the development of practice and future
policy…Martin House is in a privileged position of being able to identify these new and
emerging needs, and combined with their ability to deliver high standards of care and
support, have the potential to work with key providers in the region to develop services
that effectively meet the ongoing needs of families.” (Nicholson, 2011)
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This research confirms that organisations like Martin House, who specialise in paediatric palliative
care, have expertise and knowledge that can be used more effectively than is currently the case. The
research found that specialist paediatric palliative care providers do not always work collaboratively
with the wide array of universal services that also support families. In addition, specialist palliative
care providers have limited capacity and cannot always meet the needs of families in the area that
they work. This is also true for Martin House as a children’s hospice, with many families in the
Yorkshire and Humber region not benefiting from the holistic care provided by a children’s hospice
and the access to specialist end of life and bereavement care that this facilitates. By examining the
key barriers to effectively supporting families in the region, this research draws attention to other
potential avenues for future expansion that do not require the hospice itself to increase in size.
Four overlapping recommendations are made for Martin House leading on from this project: to
increase provision of specialist palliative medical and nursing care in the region; to provide
paediatric palliative care training to service providers and other people involved in delivering care; to
improve care co-ordination for families; and to raise awareness and understanding of paediatric
palliative care in the region. Although these recommendations are bold and based upon the author’s
interpretative understanding of Martin House, they have been carefully informed by the research
and consultation activities undertaken as part of this project; from the existing research evidence;
and from six years of conducting research in the area of paediatric palliative care.
It is therefore recommended that these suggestions for future provision are given due attention but
considered with care and aligned with the future plans for Martin House as an organisation. They
should also be considered in consultation with other key specialist palliative care providers in the
region as there is scope for taking these forward collaboratively. Additionally, the recommendations
should take into account recent policy and practice developments, including the rolling out of an
advocacy support service available through Together for Short Lives (2013a), and the 2013/14 NHS
Standard Contract specification which calls for consultant-led multi-disciplinary specialist palliative
care teams across England (NHS, 2013).
7.1 Increase Provision of Specialist Medical and Nursing Care
High quality medical and nursing care, available 24/7, and provided by empathic and knowledgeable
healthcare professionals who take the time to get to know children and their families is an important
element of the overall care and support families require. The establishment of paediatric palliative
care as a sub-speciality in medicine is welcomed by those involved in the sector, and it is likely to
result in greater knowledge and expertise about how to effectively manage childhood life-limiting
conditions, and control pain and symptoms at the end of life. Increased networking between
palliative care specialists, and improved training in paediatric palliative care as a result of its
recognised specialism, will also be beneficial and ensure that children and young people have access
to specialist paediatric palliative health care from the point of diagnosis through end of life.
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Specialist paediatric palliative care providers, which include children’s hospices and specialist
clinicians and nursing teams, are highly valued by families and other service providers, offering a
total approach to care from diagnosis through end of life. These services must be made available to
a greater number of children with life-limiting conditions and their families, and be accessible
around the clock. However, this research found that current providers have limited capacity to
effectively meet the needs of families in the areas that they work.
Increasing the capacity of Martin House to provide specialist paediatric palliative medical and
nursing care to families could help to close the current gap in provision. Establishing a specialist
team that provides medical expertise and care to both current users of Martin House and other
families in the region who do not yet require hospice stays, could also help to ensure that
specialist paediatric palliative care, including end of life and bereavement care, is provided more
equitably than is currently the case.
7.2 Provide Paediatric Palliative Care Training
Martin House and other children’s hospices provide a unique service that is highly valued by families.
However, children’s hospices are not usually involved in the regular care and respite that families
may need and currently access. The mixed quality of care provided by the range of organisations
that offer respite at home and short breaks for children and young people is a barrier to obtaining
the right support, and families expressed a desire for the quality of care provided at home and closer
to home to be of the standard received from their children’s hospice.
Martin House is well placed as an organisation to offer training within the region that is
underpinned by the holistic approach to paediatric palliative care and the principles of hospice
care that families value so highly. Accessible and flexible training will benefit both paediatric
palliative care staff and those working for respite providers and universal services that also
support children and young people with life-limiting conditions. As well as improving standards of
care, increased training will help to bridge the gaps in knowledge and raise awareness about
paediatric palliative care. Becoming a key resource for training in the region will also increase
understanding across the different sectors involved in supporting families about the role of
children’s hospices and help to dispel myths and misconceptions that continue to exist.
7.3 Improve Care Co-ordination for Families
It is important to remember that for families, life in the main happens at home. Appropriate care
that facilitates a sustainable home environment, and supports parents to fulfil their dual role of
parent and care provider is therefore essential. For families, having a dedicated person who works in
partnership with parents to predict and assess their needs as a family and helps to co-ordinate their
care is the single most important enabler for ensuring that children and families are well supported
at home. However, there continues to be little formal provision for the important role of co-
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ordinating care within the region and many parents in this study and other published research have
endured lengthy periods of time during which no single professional was responsible for their overall
care. Although the needs of each child and family vary, parents continue to report unmet needs and
there continues to be too much variation in the type, amount, and quality of care they receive. As
well as increased co-ordination of care, more comprehensive information about the range of
organisations available and better alignment of referral criteria across organisations is required to
ensure that provision is distributed more equitably.
As a child grows and their condition stabilises or worsens over time and as family circumstances
change, so will their needs for support. An on-going approach to assessment that is underpinned by
the growing expertise and knowledge about illness trajectories; effective management of life-
limiting conditions; and the resources that families may require throughout a child’s life, is necessary
to ensuring that rather than responding to parents in crisis, needs are met as they emerge. In reality,
many families experience a needs assessment process as a one-off event carried out by a single
professional or organisation, and many parents reach ‘breaking point’ before being considered for
appropriate care and support.
Martin House is well positioned to establish a core service of paediatric palliative care co-
ordinators who can build relationships with families and work across organisational boundaries to
assess and respond to families’ needs and to help ensure that more families are effectively
supported in the future. Building regional capacity to co-ordinate care will provide an opportunity
to improve information about service provision and how to access it, and identify gaps in provision
and barriers to access. Having a team of co-ordinators who already work in paediatric palliative
care will also help to ensure that assessments and referrals are guided by both condition-specific
knowledge and an understanding of the different phases children and young people with life-
limiting conditions are likely to go through from diagnosis through end of life.
7.4 Raise Awareness and Understanding of Paediatric Palliative Care
While some organisations specialise in supporting children and young people with life-limiting
conditions, others are not paediatric palliative care providers and support a much wider group of
children and young people with disabilities or complex health care needs. Consequently, their
knowledge and understanding of childhood conditions that are life-limiting and the distinct needs of
this sub-set of children and families can be limited. Additionally, their awareness about the more
specialist provision available for children and young people with life-limiting conditions can be low,
with reported misunderstandings about paediatric palliative care providers and the support available
from them.
Limited understanding and mixed opinions about paediatric palliative care and children’s hospices
can sometimes prevent families from accessing key services. Although opinion was divided, there
was a strong recommendation from many service providers and key professionals working in
Page | 73
paediatric palliative care, as well as from parents, that the term ‘palliative care’ can act as a barrier
to building effective service provision. This was also identified as a barrier to accessing hospice
support in the service evaluation of Martin House (Nicholson, 2011). Working across organisational
barriers to raise awareness of paediatric palliative care and establish a shared language that
encompasses the wider range of organisations involved in supporting families could help to ensure
that more families receive the right combination of specialist and generic support. With
established relationships with key providers across the region, Martin House is well placed to lead
on this work and address barriers to access that continue to affect the hospice.
Page | 74
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9 APPENDICES
Appendix A: Topic Guide Young People Focus Groups
Appendix B: Topic Guide Young Adults 18 and over
Appendix C: Topic Guide Young People 12-17
Appendix D: Topic Guide Parents
Appendix E: Topic Guide Bereaved Parents
Appendix F: Topic Guide Professional Frontline
Appendix G: Topic Guide Professional Other
Appendix H: Survey Questionnaire
Appendix I: Survey Questionnaire Instruction Sheet
Appendix J: Referral Audit Guidance for Data Collection
Appendix K: Referral Audit Data Sheet
Appendix L: Sample Survey Data Summary Sheet
Appendix M: Information provided to help identify families for the research
Appendix N: Key Words and Service Types identified from mapping
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Appendix A: Topic Guide Young People Focus Group
Topic Guide – Young People Focus Group
PROJECT TITLE
Mapping Services for Children and Young People with Life-Limiting Conditions
INTRODUCTION
Introduce the research and take questions to build an understanding of the project
Introduce the group
SERVICES
Discuss the services you access, and how you use them
Discuss the difficulties you have had in accessing services
Which services are the most important?
Are there services that are not available?
How well do services work together?
If you were doing this project, what would you like to know from organisations that
support children and young people?
TAKING PART IN RESEARCH
What do young people think about ‘research’?
Discuss experience of participation in research
Identify the different methods researchers use when they want to get information from
young people
How do you think researchers should go about engaging with young people?
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Appendix B: Topic Guide Young Adults 18 and over
Topic Guide – Young Adults
PROJECT TITLE
Mapping Services for Children and Young People with Life-Limiting Conditions
INTRODUCTION
Collect information about young person’s life, their family, their school / college, the
activities they enjoy, their friends
Collect basic information about their daily care needs and their condition
MAPPING CARE
Discuss the services they access, and how they use them
Draw a map of the professionals and services involved in their life and how they link
together
Discuss the difficulties they might have in accessing services
Which services are the most and least important to them?
Are there services that are not available that they would like?
How well do services work together?
How do they think services could be improved?
TRANSITION
Collect information about the transition to adult services, and how this might have
affected the support they have access to
Find out about new services they access as an adult
Find out about services that stopped after they moved to adult services
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Appendix C: Topic Guide Young People 12 to 17
Topic Guide – Young People
PROJECT TITLE
Mapping Services for Children and Young People with Life-Limiting Conditions
INTRODUCTION
Collect information about young person’s life, their family, their school / college, the
activities they enjoy, their friends
Collect basic information about their daily life, how they get to school, who helps them
get ready for school, who helps them at school, etc
MAPPING CARE
Draw a map of the professionals and services involved in their life and how they link
together
Which services are the most and least important to them?
Are there services that are not available that they would like?
How do they think services could be improved?
TRANSITION
Find out if they have discussed transitions with anyone yet
Find out about new services they access as a teenager
Find out about services that have stopped and why
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Appendix D: Topic Guide Parents
Topic Guide – Parents
PROJECT TITLE
Mapping Services for Children and Young People with Life-Limiting
Conditions: Yorkshire and the Humber
INTRODUCTION
Collect information about the family, daily life, working and school arrangements,
extended family networks etc
Collect information about child’s condition, daily care needs, carer details
MAPPING CARE
Discuss the services they access, and how they use them
Draw a map of the professionals and services involved in their life and how they link
together
Collect information about how families find out about services and about who helps
them access services (narratives around being referred / assessed for support)
Collect information about support they receive from professionals outside of their
normal working hours (informal / hidden support)
Discuss the difficulties they might have experienced in accessing services
Which services are the most and least important to them?
Are there services that are not available that they would like?
How well do services work together?
How do they think services could be improved?
TRANSITION (if applicable)
Collect information about the transition to adult services, and how this might have
affected the support they have access to
Find out about new services they access now their child is an adult
Find out about services that stopped after they moved to adult services
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Appendix E: Topic Guide Bereaved Parents
Topic Guide – Bereaved Parents
PROJECT TITLE
Mapping Services for Children and Young People with Life-Limiting Conditions
INTRODUCTION
Collect information about the child’s life and their condition, daily care needs, carer
details etc
Collect information about the family
MAPPING CARE
Discuss the services they accessed, and how they used them
Draw a map of the professionals and services involved in their life at around the time
their child died, and how they linked together to support the family
Collect information about how families found out about services and about who helped
them access services (narratives around being referred / assessed for support)
Collect information about support they receive from professionals outside of their
normal working hours (informal / hidden support)
Discuss the difficulties they might have experienced in accessing services
Which services were the most and least important to them?
Were there services that were not available that they would have benefited from?
How well did services work together?
How do they think services could be improved?
TRANSITION (if applicable)
Collect information about the transition to adult services, and how this might have
affected the support they had access to
BEREAVEMENT SERVICES
Collect information about bereavement services they have accessed, and how they have
helped / how they found out about them etc.
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Appendix F: Topic Guide Professionals Frontline
Topic Guide – Professionals
PROJECT TITLE
Mapping Services for Children and Young People with Life-Limiting Conditions
ROLE
Can you tell me about the organisation you work for?
Can you tell me a bit about your role in supporting children with life-limiting or life-
threatening conditions and their families?
How long have you worked here?
How long have you worked with children with life-limiting or life-threatening conditions?
SUPPORTING FAMILIES
Collect information about when and how families access the service
Collect information about the way in which families are referred and assessed for support
Collect information about the barriers and difficulties families have in accessing the
service
Collect information about unmet needs and gaps in provision
Collect information about the distinction between services that are palliative and other
services
WORKING WITH OTHER SERVICES
Collect information about how children are referred to other services, and the process of
assessment that is involved
Collect information about how professionals work together, and how the organisation
works with other organisations providing palliative care
Collect information about how information about families is shared between
organisations to ensure they are being adequately supported
Collect information about the transition to adult services and the impact this has on
palliative care for young people and their families
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Appendix G: Topic Guide Professionals Other
Topic Guide – Professionals Other
PROJECT TITLE
Mapping Paediatric Palliative Care in Yorkshire and the Humber
ROLE
Can you tell me about the organisation you work for?
Can you tell me a bit about your role?
How long have you worked here?
How long have you worked with children with life-limiting or life-threatening conditions?
PAEDIATRIC PALLIATIVE CARE – Current Provision
Can you define paediatric palliative care?
What do you see as the main services under the umbrella of paediatric palliative care?
Explore views on other provision not identified (eg. education / social services etc)
Collect information about how families access services
Explore views on the difficulties families face in accessing the support they need
Collect information about the transition to adult services and the impact this has on
palliative care for young people and their families
Explore views on how well providers of palliative care services work together
Collect information about potential funding / legislative / bureaucratic barriers
PPC FUTURE
How can palliative care services be improved?
Collect information about unmet and emerging needs of families
Collect information about future configuration and funding of services regionally and
nationally
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Appendix H: Survey Questionnaire
Mapping Services for Children and Young People
with Life-Limiting Conditions
YORKSHIRE AND THE HUMBER
SERVICE PROVIDER
QUESTIONNAIRE
www.supportingfamilies.org.uk
Thank you for taking the time to
complete this questionnaire.
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The information on this page is required for services to be included in the directory.
1. Name of Service: ...............................................................................................
Postcode*: ................................................................................................................. * Please enter the postcode for the main location of the service
Address: .................................................................................................................
.................................................................................................................
.................................................................................................................
Telephone: ................................................................................................................. Helpline: ................................................................................................................. (If applicable)
Fax Number: ................................................................................................................. Email address: ................................................................................................................. (Please enter a public email address for your service) Service Website: .................................................................................................................
2. Service Description
Please provide a brief description of what the service provides.
(Examples: nursing team providing outreach to life-limited children; holiday club for disabled children; online
support group for parents of children with cancer; short breaks for children with complex health care needs.)
................................................................................................................................................
................................................................................................................................................
................................................................................................................................................
................................................................................................................................................
................................................................................................................................................ * This will be the description entered on the directory
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IMPORTANT – Only the information inside shaded boxes will be included in the directory.
If you do not wish for certain information to appear in the directory but are happy for us
to include it in the research, please insert an X in the box to the right of the question.
3. Normal Opening Hours
................................................................................................................................................ ................................................................................................................................................ (For example, Mon to Fri 9-5, or 24/7)
4. Out of Hours Service
Please describe any out of hours services you offer. (For example, answering machine service.)
................................................................................................................................................ ................................................................................................................................................
5. Is there a charge for your service? * Yes No
* Please select Yes even if the charge is covered by funding applied for on behalf of or by the family (see Question 5.2).
5.1 If you answered Yes to Question 5, please provide details of the charges that apply:
................................................................................................................................................ ................................................................................................................................................ ................................................................................................................................................
5.2 If you answered Yes to Question 5, please tell us if there is funding
available to cover the charge for your service?
Yes No Don’t Know
5.3 If you answered Yes to Question 5.2, please provide details of the funding available:
................................................................................................................................................ ................................................................................................................................................
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6. Please describe how you support families whose understanding of English is
limited? (For example, in-house translator; access to translation service; not able to support families.)
................................................................................................................................................ ................................................................................................................................................
7. Is there normally a waiting list for your service? Yes No
7.1 If you answered Yes to Question 7, please tell us how long, on average, families have
to wait to access the service after they have been placed on the list.
................................................................................................................................................
8. If families have to travel to access the service, please provide details of any
transport provision, or any support you offer families in organising transport.
................................................................................................................................................ ................................................................................................................................................
9. If families visit the service, are the premises accessible by wheelchair?
Yes No Not Applicable
10. Is the service….?
NHS Local Authority Charity Private
Other (please provide details) ……………………………………………………………………………………..
11. Please indicate the sources of funding the service currently receives. Please tick ALL that apply.
NHS Trust NHS Primary Care (formerly PCT)
Department of Health Local Authority
Donations from Individuals Fundraising Activities
Donations from Businesses Service Users
Other...…………………………………................................................................................
Other...…………………………………................................................................................
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12. Does your service ACCEPT referrals from the following sources?
Please tick ALL that apply. YES NO
Family member
GP
Social Worker
Community Children’s Nurse
Teacher
Health Visitor
Consultant / Paediatrician
Clinical Nurse Specialist (e.g. Oncology)
Voluntary Sector Organisation
Other ………………………………………………………………………………………………………
Other ………………………………………………………………………………………………………
12.1 From which source do you receive the most referrals?
(Please list more than one if applicable.)
................................................................................................................................................
13. When a child is referred to your service, do you require information from their
GP or paediatrician in order to assess whether or not they can access the service?
Yes, from the GP Yes, from the paediatrician No
13.1 If you answered Yes to Question 13, please provide details of how a child’s GP or
paediatrician is involved in the referral.
................................................................................................................................................
................................................................................................................................................
14. NUMBERS OF CHILDREN AND YOUNG PEOPLE SUPPORTED BY SERVICE
Please answer the following questions for the period 1st April 2011 to 31
st March 2012
(Please enter the numbers into the relevant boxes.)
Total number of children / young people supported:
Total number of children / young people
supported who have a life-limiting condition:
Total number of bereaved families supported:
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15. Please give a brief description of the children and young people you support. (Examples: children with life-limiting conditions; disabled children; children with a specific condition or impairment)
................................................................................................................................................
................................................................................................................................................
................................................................................................................................................
16. Between what ages does a child have to be in order to access the service?
Age for Referrals: MINIMUM MAXIMUM
Age for using Service: MINIMUM MAXIMUM
16.1 Please provide details of any additional age criteria that apply to your service:
................................................................................................................................................ ................................................................................................................................................
17. Where do children have to live in order to access the service you provide?
(For example England; West Yorkshire; Bradford postcode; York PCT; Leeds City)
................................................................................................................................................ ................................................................................................................................................ ................................................................................................................................................
18. Please provide details of any assessment criteria you apply when a child or
young person is referred to your service.
(For example scoring charts, needs assessment, family circumstances, means-testing)
Criteria:.................................................................................................................................
Criteria:.................................................................................................................................
Criteria:.................................................................................................................................
Criteria:.................................................................................................................................
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19. Do you provide direct care or support to children and young people?
Yes If you have answered Yes please GO TO QUESTION 20
No If you have answered No please GO TO QUESTION 22
20. Is your service able to support children and young people who are
dependent on the following? (Please tick ALL that apply)
YES NO
Supportive Ventilation (Level 1 / High level of need – can be discontinued for up to 24 hours without clinical harm)
Necessary Ventilation (Level 2 / Severe level of need – has respiratory drive and would survive accidental disconnection but would be unwell)
Essential Ventilation (Level 3 / Priority level of need – unable to breathe independently, disconnection would be fatal)
Total Parenteral Nutrition
Enteral Nutrition
Tracheostomy
Supportive intermittent intravenous / Subcutaneous therapies (not nutrition)
Essential continuous intravenous / Subcutaneous therapies (not nutrition)
Dialysis
Urinary catheter care AND / OR Catheterization
Stoma Care
Monitoring technologies (e.g. blood sugar)
Oxygen
21. Please provide details of any other care a child might require that will mean
they cannot access your service.
(For example DNRs; administer drugs; lifting and handling; incontinence; specific impairments)
Other Criteria: ........................................................................................................................
Other Criteria: ........................................................................................................................
Other Criteria: ........................................................................................................................
Other Criteria: ........................................................................................................................
Other Criteria: ........................................................................................................................
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Is the
work with children and families
…………………………………
22. What types of service do you provide, and in which settings?
Please tick ALL that apply and provide details of other services you offer that are not listed.
Type of Service service 24/7?
Service setting
Hospital setting
Home setting
Other setting (provide details)
Short breaks for child ONLY …………………………………
Short breaks for child and family …………………………………
Dedicated hospice care …………………………………
Consultant-led specialist palliative care …………………………………
Nursing care …………………………………
Personal care (e.g. personal assistant / carer) …………………………………
Day care …………………………………
Emergency care …………………………………
Antenatal support …………………………………
Neonatal support …………………………………
Sibling support …………………………………
Spiritual support …………………………………
Telephone advice / contact …………………………………
Practical support (e.g. home help) …………………………………
Contact / key worker visits …………………………………
Symptom management …………………………………
Leisure and sport activities …………………………………
Wish granting …………………………………
Holidays …………………………………
Grants and financial assistance …………………………………
Financial and benefits advice …………………………………
Equipment and adaptations …………………………………
Transport …………………………………
Parent support group / network …………………………………
Befriending …………………………………
Signposting …………………………………
Training and education for people who
Physiotherapy …………………………………
Psychological therapies / counselling …………………………………
Play therapy …………………………………
Complementary therapies …………………………………
Other therapies e.g. music / hydrotherapy …………………………………
…………………………………………………………………
Other ………………………………………………………. …………………………………
Other ………………………………………………………. …………………………………
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family
23. Does your service provide end of life care? Yes No
23.1 If you have answered Yes to Question 23, please tell us what services you offer
children who are at the end of life. (For example emergency nursing care; cool room; funeral planning)
Service type: ........................................................................................................................
Service type: ........................................................................................................................
Service type: ........................................................................................................................
Service type: ........................................................................................................................
Service type: ........................................................................................................................
24. Do you provide a bereavement service? Yes No
24.1 If you have answered Yes to Question 24, please tell us what services are available:
Service Type Parents Siblings Extended
Group support (e.g. workshop series, residential weekends)
Individual support (e.g. home visits, sessions at service)
Telephone support and advice
Counselling (e.g. psychologist / specialist bereavement counselling)
Befriending
E Listening (e.g. support via email or the internet)
Play therapy
One-off events (e.g. remembrance / memorial days, picnics)
Signposting to other bereavement services / support
Other: …………………………………………………………………………………………
Other: …………………………………………………………………………………………
Other: …………………………………………………………………………………………
24.2 As part of your bereavement service, do you provide bereavement training or
education to staff and professionals who work with children and families?
Yes No
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* WTE corresponds to a working week of at least 35 hours, depending on an individual service.
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25. Please give the numbers of whole time equivalent (WTE) and headcount of staff
that you employ and their professional background (see below for example).
Please only report staff providing direct care and / or support to children, young people and families.
If some-one works half the designated hours of a full week that corresponds to 0.5 WTE.
** Medical staff includes consultants, staff grade doctors, associate specialist doctors, junior doctors and general practitioners.
Calculating WTE and Headcount – Example
Service X runs a small respite centre for children and young people with complex health care needs.
The service employs 4 children’s nurses. 2 work full-time (40 hours) and 2 work 20 hours per week.
The headcount for registered children’s nurses is 4
The WTE for registered children’s nurses is 3
Each full-time nurse is 1 WTE (total = 2).
Each part-time nurse works half a week, i.e. 0.5 WTE. Combined, the two part-time nurses total 1 WTE.
The service employs 12 care workers. 7 work full- time (40 hours). 2 work 30 hours, 1 works 20 hours and 2 work 10 hours per week.
The headcount for support workers is 12
The WTE for support workers is 9.5
Each full-time worker is 1 WTE (total = 7).
The combined weekly hours of part-time workers96 is 100. This is the equivalent of 2.5 WTE.
Professional background Number of WTE* Headcount
Registered Children’s Nurse (RSCN / RNC)
Dual Qualified Children’s Nurse (e.g. RSCN & RGN)
Other Registered Nurse (RGN; RNLD; RNMH)
NVQ qualified Healthcare Assistant
Medical Staff **
Nursery Nurse
Play Specialist
Counsellor
Psychologist
Social Worker
Teacher
NVQ qualified Teaching Assistant
Physiotherapist
Occupational therapist
Dietician
Speech and Language Therapist
Complementary Therapist (e.g. Aromatherapy, Reflexology)
Youth Worker
NVQ qualified Support Worker
Unqualified Care / Support Worker
Other……………………………………………………………………………….
Other……………………………………………………………………………….
Other……………………………………………………………………………….
NO
26. Please describe how you provide medical cover within your service?
................................................................................................................................................ ................................................................................................................................................ ................................................................................................................................................
27. Does your service include volunteers to provide
support to children, young people and families? Yes No
27.1 If you answered Yes to Question 27, how many
volunteers do you currently have?
(Please insert headcount in the box.)
28. Does your service use sub-contracted or agency workers
to provide support to children, young people and families? Yes No
28.1 If you answered Yes to Question 28, how many
agency and contract workers do you currently have?
(Please insert headcount in the box.)
29. Is there an equivalent adult service?
YES it is provided by our organisation
YES it is provided by another organisation
NO but an adult service is required for young people accessing our service
an adult service is not required (for example, neo-natal service)
29.1 If you answered Yes to Question 29, please provide details for the adult service.
Service Name: ........................................................................................................................
Telephone No: ........................................................................................................................
Address: ........................................................................................................................
........................................................................................................................
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THANK YOU FOR TAKING THE TIME TO COMPLETE THIS QUESTIONNAIRE
RESEARCH PROJECT
Mapping Services for Children and Young People
with Life-Limiting Conditions
YORKSHIRE AND THE HUMBER
www.supportingfamilies.org.uk
If you would like further information about the questionnaire
and how to complete it, or you require another copy of the questionnaire
please contact us on 01904 481575
or at [email protected]
Please return your completed questionnaire in the envelope provided to:
J N Research
10 Harrier Court, Airfield Business Park
Elvington, York YO41 4EA
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Appendix I: Survey Questionnaire Instruction Sheet
Service Provider Questionnaire – Information
What is the research about?
This research has been funded by Martin House Children’s Hospice to learn more about the services
available to children and young people with life-limiting conditions living in the Yorkshire and
Humber region. The aims of the research are:
To collect information about services available to families living in the region and create an online
directory for families and professionals to use in locating the support they need
To learn more about the support that is available to families
To identify the barriers and enablers to accessing services, and the difficulties families experience
in obtaining the support they need.
What does the research involve?
This research has two phases. In the first phase we are asking all services supporting children and
young people with life-limiting conditions in our region to complete this questionnaire. For the
second phase we are talking to families and professionals to learn more about the support families
receive.
Do we have to take part in this research?
Your participation is voluntary. However it is essential that we collect information about the support
available in our region. The directory will be publicly available for families and others to use in
locating services, and will only be useful if it is comprehensive.
How will the information we provide be used?
In the first instance ALL the information you provide will be used as research data in order for us to
learn more about the configuration of services, and about the services available to families.
An online directory will then be developed using ONLY THE DATA CONTAINED IN THE SHADED
BOXES. If you wish for some of this information to be excluded from the directory but are happy for
us to include it in the research, please place an X in the box to the right of the information you
provide.
Who do we contact for further information about completing the questionnaire?
Please give Ruth or Jo a call on 01904 481575 if you have any questions about completing the
questionnaire or about the research more generally. If you feel that some of the questions are not
relevant to your service please call us and we can take the information over the phone if you prefer.
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Appendix J: Referral Audit Guidance for Data Collection
REFERRAL AUDIT – Martin House Children’s Hospice: Guidance for Data Collection
An audit of all referrals received over the six month period Jan 2011 to June 2011 The purpose of the audit is to examine the quality of information received in referrals, with an aim to
improving the referral process to ensure that correct and required information is provided in all referrals.
It is likely that as a result of this audit, the existing referral form Martin House use will be modified.
The information provided in each referral will be compared against the existing Martin House referral
form and against a gold standard referral form recommended by the Scottish Intercollegiate Guidelines
Network (SIGN, 1998). This is currently the only work carried out to produce a standard referral
document. Additional items not contained on the current referral form have also been included in the audit. This
information may have been provided in additional documentation provided by a consultant or GP, and it
was felt that these additional items form an essential part of the referral process.
POINTS FOR DATA COLLECTORS
REFERRAL DOCUMENTATION When determining whether or not information has been provided for the referral, you must only use the
referral form, and any letters or documents provided to Martin House where the date falls within the
period from the beginning of the referral (date of referral) to the decision date. Where the decision date
has not been entered on the referral form, use the date contained in the letter sent from Martin House
to the family with the outcome of the referral.
YES / NO QUESTIONS The rows in the form that are not shaded require only a Y or N entry. The actual information relating to
these questions is not required for the audit. We only wish to find out if the information has been
provided or not. Possible entries:
Y = the information is contained in the referral documentation N = the information is not contained in the referral documentation
EXAMPLE Religion – Where the form is blank, we cannot assume that this means the child has no religion. The
entry would be N, i.e. the information has not been provided. Where the form shows NONE, this means
the child has no religion and therefore the entry would be Y, i.e. the information has been provided. Some items are not included on the referral form e.g. ethnicity / language. However, we would like to
know if this has been provided as part of the referral, i.e. is this information included in the GP /
consultant letter, or perhaps in the free text section of the referral form? We are still looking for a YES or
NO, but remember to check all the referral documents.
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Also, remember not to assume that the ethnicity / address / religion / language are the same for the
child and parents, or the same for the mother and father. Where you are not clear, or you find yourself
making assumptions, the answer would be N because the information has not been clearly provided. OTHER QUESTIONS The rows in the form that are shaded require you to transfer information that has been provided in the
referral documentation into the audit form. Where it is text, please insert as ‘verbatim’ (i.e. word for
word) where possible. Do not make assumptions about the information, as it is the quality of information
we are concerned with. Some of the shaded rows require you to search through the case notes for information that is needed
about a child or family for the audit. Any question requiring you to do this will make it clear that this is
the case (“USE ALL NOTES”.
PARENT / CARER DETAILS This section may be quite complex for some children, and again we are assessing the quality of
information provided. For example, where it is clear in the referral that the child lives at home with
parents, then the address of the mother and father have been included (Y) because it is the same
address as the child’s. Where it is indicated that a parent is deceased or absent / not known, then the information about that
parent has been provided. If this is the case, insert N/A in the name field for that parent. Where the child lives with foster parents / institutional setting / extended family / adopted parents, we
would expect to be provided with this information at the time of referral. We would also need
information about those with parental responsibility / legal guardianship where this is different, as they
would be the person with decision making power for the child.
PROFESSIONALS Professionals may include specialist consultants / community nurses / social workers / specialist nurses
or health visitors / key workers / physiotherapists / play therapy workers etc RESPITE / OTHER SUPPORT This is so varied and diverse that it is easier to write in what support is in place at the time of referral and
whether or not this information is provided on the referral form / letter.
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MEDICAL AND SOCIAL INFORMATION In these sections we would like to know what information is provided at the point of referral and who
provides it at what time.
For example:
PAST MEDICAL HISTORY
“Child has been in PICU three times this year (3)” The number in brackets indicates which document (eg referral form / consultant letter) provides this
information. For social and other information, please extract the relevant sections from the referral form or GP /
consultant letter and enter them as verbatim text where possible.
CONFIDENTIALITY Although we have asked for the date of birth to be included, this information will be swapped for a
unique identifier so that the data used for analysis is anonymised. Martin House will then store a
database containing the linked identifier and date of birth so that should the researchers need to check a
child’s notes at a later stage, they are able to do so. Diagnostic information can sometimes lead to the identification of a child. Where a child has been
diagnosed with a very rare condition, the information entered can be altered to describe the type of
condition, rather than entering the name of the condition.
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Appendix K: Referral Audit Data Sheet
REFERRAL AUDIT
Record No (IDENTIFIER)
Child’s Date of Birth 00/00/0000
PERSON COMPLETING AUDIT
Name
Role
Date of Completion
REFERRAL DOCUMENTS
MH Referral Form Y/N
Date of referral form INSERT [Date] or [N] (not provided)
Letter from GP Y/N
Date of GP letter INSERT [Date] or [N] (not provided)
Letter from consultant Y/N
Date of consultant letter INSERT [Date] or [N] (not provided)
Letter from referring professional (if not GP or consultant above)
Y/N
Date of referral letter INSERT [Date] or [N] (not provided)
Other documentation INSERT TYPE where applicable
Date of other documentation INSERT [Date] or [N] (not provided)
SOURCE OF REFERRAL
Name of Referrer Y/N
Address Y/N
Email Y/N
Telephone No Y/N
Professional Type INSERT Hosp cons / Hosp nurse / GP / Comm
paed / Comm nurse / Allied health / Social worker / Family / Other
IF OTHER: INSERT TYPE
Town / City (if professional) INSERT
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Relationship to child if a family member / friend
of family etc
INSERT
REFERRAL INFORMATION
Reason for referral (FOR EXAMPLE - symptom
management / respite / community outreach /
end of life care)
INSERT INFORMATION PROVIDED BY
REFERRING PROFESSIONAL OR ON REFERRAL
FORM (word for word where possible) OR [N] if the information is not included
Is the urgency of the referral indicated on the
referral form or letter?
Y/N
If the urgency of the referral is indicated, please
insert here.
Does the referral indicate whether this is the
child's first referral or not?
Y/N
No. of referrals including this referral CHECK ALL
NOTES
INSERT NUMBER
Does the referral indicate whether a parent /
legal guardian is AWARE of the referral?
Y/N
Does the referral indicate whether a parent /
legal guardian has consented to the referral?
Y/N
Insert details of parental awareness / consent to
referral CHECK ALL NOTES
Does the referral indicate whether the child is
AWARE of the referral?
Y / N (irrespective of age or cognitive ability)
Does the referral indicate if the child consented /
assented to the referral?
Y / N (irrespective of age or cognitive ability)
Insert details of child awareness / consent to
referral CHECK ALL NOTES
OUTCOME OF REFERRAL
DECISION YES / NO / PENDING
Date of Decision INSERT [DATE]
Where decision is no or pending, insert reasons
CHECK ALL NOTES
If child was accepted, has family used Martin
House? CHECK ALL NOTES
If family has not used Martin House what are the
reasons? (eg child died before admission, family
chose not to) CHECK ALL NOTES
CHILD INFORMATION
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105
Child's Name Y/N
Child's Date of Birth Y/N
Age of child at referral INSERT [AGE]
Gender Y/N
Gender USE ALL NOTES INSERT [MALE / FEMALE]
Child's Ethnicity Y/N
Child's Ethnicity USE ALL NOTES INSERT Ethnicity
Child's HOME ADDRESS Y/N
Child's HOME TELEPHONE Y/N
Does the referral indicate whether the child is in
hospital at the time of referral?
Y/N
Is the child in hospital at the time of referral?
USE ALL NOTES
INSERT YES OR NO (for yes provide further
information)
If child is in hospital, is the name of hospital provided in the referral?
Y/N
If child is in hospital, is the name or no. of ward
provided in the referral?
Y/N
Home Health District (PCT) Y/N
Religion Y/N
Name of Religious Leader (where the child has no
religion as indicated, this can be NA) Y/N/NA
Child's First Language USE ALL NOTES INSERT
Where the child's first language is not English, does the referral include this information?
Y/N
Diagnosis (INSERT ONLY THE INFORMATION
PROVIDED ON THE REFERRAL DOCUMENTATION)
Does the referral indicate whether the child is
aware of their diagnosis?
Y/N
Is the diagnostic key provided on the referral form / letter?
Y/N
DIAGNOSTIC KEY (Use all notes) INSERT
ACT Category 1, 2, 3, 4
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106
PARENT INFORMATION
Who does the child live with at time of referral?
USE ALL NOTES FOR THIS (please indicate whose
details are provided on the referral below)
Where the child does not live with parents, does
the referral indicate who has legal guardianship?
Y/N
Name of Mother Y/N
Address of Mother Y/N
Contact Telephone for Mother Y/N
Mother's Ethnicity Y/N
Mother's Ethnicity USE ALL NOTES INSERT Ethnicity
Religion of Mother
Mother's First Language USE ALL NOTES INSERT
Where mum's first language is not English, does
the referral include this information?
Y/N
Name of Father Y/N
Address of Father Y/N
Contact Telephone for Father Y/N
Father's Ethnicity Y/N
Father's Ethnicity USE ALL NOTES INSERT Ethnicity
Religion of Father
Father's First Language USE ALL NOTES INSERT
Where dad's first language is not English, does
the referral include this information?
Y/N
Is the marital status of the child's parents
indicated in the referral?
Y/N
Marital Status of Parents at time of referral USE
ALL NOTES
INSERT
Where parents separated / divorced is it clear in
the referral who has parental responsibility?
Y/N
Provide details of any illness (physical /mental) in
parents USE ALL NOTES
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107
Does the referral include parental illness, as
indicated above?
Y/N
SIBLING INFORMATION
No. of Siblings at time of referral (USE ALL
NOTES) INSERT NUMBER
Names of Siblings Y/N/NA
Date of Birth OR Age of Siblings Y/N/NA
Provide details of any illness / disability in
siblings (USE ALL NOTES)
Does the referral include sibling illness /
disability, as indicated above?
Y/N
REGULAR SUPPORT FROM EXTENDED FAMILY / FRIENDS
Provide details of any regular support from
extended family / friends at time of referral?
USE ALL NOTES
Is this information included in the referral? Y/N
Where support is in place, is the name of person provided?
Y/N
Is a contact address, email or telephone number provided?
Y/N
Is the relationship this person has to the child
provided?
Y/N
DETAILS OF SUPPORT / PROFESSIONALS /
SERVICES
Name of School / Nursery / College Y / N / NA
Contact address, email or telephone Y / N / NA
Name of GP Y/N
Contact address, email or telephone Y/N
Name of Child's Consultant Y/N
Contact address, email or telephone Y/N
OTHER PROFESSIONALS INSERT TYPE and y/n to indicate presence of contact details
PROF 1 TYPE
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108
Contact address, email or telephone y/n
PROF 2 TYPE
Contact address, email or telephone y/n
PROF 3 TYPE
Contact address, email or telephone y/n
PROF 4 TYPE
Contact address, email or telephone y/n
PROF 5 TYPE
Contact address, email or telephone y/n
PROF 6 TYPE
Contact address, email or telephone y/n
PROF 7 TYPE
Contact address, email or telephone y/n
Provide details of any regular respite (home or other setting) / paid carer / shared care / or other in place or pending at time of referral?
USE ALL NOTES
Is this information included in the referral documentation?
MEDICAL INFORMATION In each category below, indicate the source of each piece of information: 1 - Referral Form 2 - GP Letter 3 - Consultant Letter 4 - Referring Letter (if different to 2 or 3) 5 - OTHER For example: 3 x PICU admissions in last year (2)
History of Presenting Condition INSERT INFORMATION PROVIDED AS PART OF
THE REFERRAL ONLY (i.e. clinical information regarding duration, course, and severity of condition / symptoms etc)
Past Medical History INSERT INFORMATION PROVIDED AS PART OF
REFERRAL ONLY (i.e. episodes in PICU, major surgeries and illnesses, etc)
Current and recent medical treatment INSERT INFORMATION PROVIDED AS PART OF
REFERRAL ONLY
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Clinical Warnings INSERT INFORMATION PROVIDED AS PART OF
REFERRAL ONLY (i.e. factors that put the child
or HCP at increased risk, eg allergies, blood- borne viruses)
Prognosis Information INSERT INFORMATION PROVIDED AS PART OF
REFERRAL ONLY (i.e. indicators of child's stage
of condition, level of deterioration or decline, explicit information about prognosis)
SOCIAL AND OTHER INFORMATION
Indicate the source of each piece of information: 1 - Referral Form 2 - GP Letter 3 - Consultant Letter 4 - Referring Letter (if different to 2 or 3) 5 – OTHER For example: Parents currently divorcing (2)
EXTRACT INFORMATION AND INSERT AS
VERBATIM TEXT WHERE POSSIBLE - examples of information will relate to family's ability to cope
/ lack of support / additional circumstances
such as illness or divorce / child mental health
problems
Appendix L: Sample Survey Data Summary Sheet
Mapping Services for Children and Young People
with Life-Limiting Conditions – Yorkshire and the Humber
DATA SUMMARY SHEET
Name of Service: Barnardo's Disability Support & Inclusion Service
Service postcode: LS10 2JA Method: Online
Contact Name: Yasmin Hanif Date: 14/12/12
Contact Telephone: 0113 2720832 Service ID: 125
Contact Email: [email protected]
Service Description
Barnardo's DSI Service is a regional service with a base in Leeds and one close to Beverly in East Yorskhire. We are
registered with The Care Quality Commission (CQC) and provide a range of Services across Leeds, Wakefield, Hull
and the East Riding to families with children with a disability. Each service has it's own individual criteria (i.e. range
ranges), but as a general rule we support children and young people up to the age of 18 years. Some of the services
we offer are: Short Breaks, Inclusion, All Stars Youth Groups (East Riding only), Sensory Integration Work, and work
with Early Years providers. We support young people with a range of disabilities (Autism, Aspergers, Down
Syndrome, Learning Disabilities, Cerbal Palsy and Complex Health Needs). The service is able to provide invasive
care where there is an agreement in place with the local authority and health authority for that locality.
Service Type: Charity
Main Source of Referrals: Leeds Short Breaks - Social Care: Children's Complex Health and
Disabilities Team only Wakefield Get Started Inclusion Service: social workers, schools, parents Description of Service Users
Life limiting conditions: Battons Disease, Distal Spinal Muscular Atrophy, Lennox Gasteau Syndrome,
Epilepsy & Complex Health Needs, Neuro-degenerative conditions Physical Disabilities: wheelchair users,
cerebal palsy Learning Disabilities Children with invasive care needs
Age for Referrals: MINIMUM N/R MAXIMUM N/R
Age for using Service: MINIMUM N/R MAXIMUM N/R
Geographical Area
Leeds, Wakefield, Hull and East Riding - varying services in each area
Equivalent adult service: Yes – it is provided by another organisation
Details of adult service provided: N/R
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Appendix M: Information provided to help identify families for the research
Categories of Life-Limiting and Life-Threatening Conditions
Information available from Together for Short Lives
Developed by paediatric palliative care
CATEGORY 1
Life-threatening conditions for which curative treatment may
be feasible but can fail.
Where access to palliative care services may be necessary when
treatment fails or during an acute crisis, irrespective of the
duration of that threat to life. On reaching long-term remission
or following successful curative treatment there is no longer a
need for palliative care services.
Examples: cancer, irreversible organ failures of heart, liver,
kidney. CATEGORY 2
Conditions where premature death is inevitable, where there
may be long periods of intensive treatment aimed at prolonging
life and allowing participation in normal activities.
Examples: cystic fibrosis, Duchenne muscular dystrophy.
CATEGORY 3
Progressive conditions without curative treatment options,
where treatment is exclusively palliative and may commonly
extend over many years.
Examples: Batten disease, mucopolysaccharidoses.
CATEGORY 4
Irreversible but non-progressive conditions causing severe
disability leading to susceptibility to health complications and
likelihood of premature death. Examples: severe cerebral palsy, multiple disabilities such
as following brain or spinal cord injury, complex health care
needs and a high risk of an unpredictable life-threatening
event or episode.
specialists in conjunction with Together for
Short Lives, there are four broad categories
of life-threatening and life-limiting
conditions. Categorisation is not easy and
the examples used are not exclusive.
Diagnosis is only part of the process. The
spectrum and severity of disease, and
subsequent complications are relevant too,
and for some ill children their prognosis
may change as their condition progresses. Used carefully and taking into account the
individual needs of each child and family,
these categories offer a useful tool to
identify disabled children and young people
who have a life-limiting condition, in other
words those who are not expected to live
into adulthood. The conditions included in each of the four
categories are continually modified as the
treatment and management of childhood
illnesses advance. We are looking for families within all of
these categories, as the illness trajectory
and paediatric palliative care needs is
distinct within each.
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Appendix N: Key words and service
types identified during mapping
Service Key Words Accommodation Adaptations Advice Advocacy Assessment Awareness Befriending scheme Benefits Bereavement Bereavement Support Breathe Easy Campaigning/Lobbying Cancer Unit Caravan Care Care planning Carer groups Carers & employment Caring with confidence Chalet Chaperone Clinical Co-ordination of Service Input Comfort Community based breaks Community Nurses Complex care needs Contacts Coordination Counselling Courses Cystic Fibrosis Day care Disabiity Donor Down's Early years Education Emotional Support End of life care Entertainment Equipment Essential items Face to face and group support Family based breaks Family support Feeding Financial Help Financial support
Foster care
Gastrostomy Care Grants Group sessions Health Care Support Workers Helping Hands Helpline Holidays Holistic Home based support Home Care Service Home from Home accomodation Home Help Home Nursing Home Support Home Visits Hospital Visit Support Housing Adaptations Ideas Improve lives of patients Independence Individual & Family Support Information Keyworker Leaflets Leisure Lifelong learning Links Lobbying Local support groups MacMillan family support worker Medical Equipment Medication Music Therapy National Helpline Night services Nursery Nursing Oncology care Online Forum Outreach Oxygen Paediatric nurses Palliative care PALS Parent networking Parent-to-parent Peg Care Plan of Care Play
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Play Specialists Play Therapy Playschemes Practical Proactive access to service provision Professional development Professional Support Professional Training Provision of musical instruments Psychological Support Public Awareness Raise Awareness Referrals Research Residential Respite Respite in the home Sensory Short Breaks Sibling support Sick children Signposting Social activities Specialist Nurse Suggestions Support Support group Support network Symptom control Teaching care skills Teenage Telephone support Terminal care Therapies (complimentary/make-over) Therapies (physiotherapy) Training Transport Travel Understanding Website Wish Granting Workshops Wound care Youth groups
Main Service Types
Advice & Information Advocacy Bereavement Support Care, Support, Research Community & family based short breaks Community based nursing & support Counselling
Counselling/Psychological Support Day Nursery Education Expert Information, advice & support Family support Financial Assistance for Holidays Financial Help/Wish Granting Holiday/Leisure Home Nursing Home Visits Homes from home Hospice at Home Information, Advice & Support Information/Advice Making dreams come true Music Therapy Nursing Nursing Care One to one nursing care Online Suggestion Box Palliative & Terminal Care Palliative Care Rehabilitation Research Residential Respite Respite Respite Holidays Respite to carers and those with care needs Short breaks Short Breaks/Holiday Programme Short breaks/Respite Short-break centre Short-break residential centre Specialist Nursing Assessment Specialist palliative care Support Support & Care for premature and sick babies Support & guidance Support for disabled childen and their families Support to disabled children Support to donor families Support/Advice Wish granting Wish granting/Entertainment
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