A Life More Ordinary - Findings from the Long-Term Neurological
Conditions Research Initiative.
An independent Overview Report for the Department of Health
Copyright statement
© Maggie Winchcombe. All rights reserved
This report and its contents may be freely copied and/or distributed providing the source is acknowledged.
Acknowledgements
This report is the final output from the Long-Term Neurological Conditions Research
Initiative (LTNC RI) (2004-2011), funded by the Policy Research Programme (PRP),
Department of Health and supported by the PRP’s Central Commissioning Facility
(CCF).
Grateful thanks are due to team members who have contributed to and supported
the work during the course of the initiative. In particular:
• Anthony Travis, who produced the newsletters and web-site
• Sophie Lederer, who provided administrative support
• Farheen Shafiq, who provided contractual support to the research teams
• Members of the Advisory Group who showed tremendous commitment and
took an active part in all stages of the research process
A special tribute is due to Roy Webb, who was a valued member of the Advisory
Group from its inception until his untimely death in 2009.
Thanks and acknowledgements are also due to all the research teams who
participated in the initiative and the many individuals who have reviewed and
commented on proposals and final reports.
Special thanks go to Dr Carol Lupton at the PRP, who was instrumental in
establishing the initiative, for her guidance, leadership and unfailing support.
Disclaimer
The views and opinions expressed in this report are those of the author and do not
necessarily reflect those of the Policy Research Programme, nor the Department of
Health.
CONTENTS
Foreword ................................................................................................................. 1
Executive Summary ................................................................................................ 3
1.
Introduction .................................................................................................. 9
1.1.
About this report .............................................................................................. 9
2.
Purpose and Scope of the research .......................................................... 11
3. Key Findings ................................................................................................... 15
3.1
The Shape of the Services ............................................................................15
3.1.1 The overall picture ........................................................................................ 15
3.1.3 Service co-ordination .................................................................................... 17
4. Improving outcomes for people with LTNCs .................................................. 33
4.1 What the research tells us about improving outcomes ......................................33
4.1.1 The continuity framework ............................................................................... 33
4.1.2 Relationship continuity ................................................................................... 34
4.1.3 Management continuity .................................................................................. 36
4.1.4 Information continuity ..................................................................................... 39
4.1.5 Continuity of personal agency and social context ........................................... 41
4.2 Building services for the future ...........................................................................44
4.2.1 Improving outcomes for people with LTNCs ................................................... 44
4.2.2. The TEAR model for future services ............................................................. 48
5. Conclusions ..................................................................................................... 51
5.1 Summary Checklists .......................................................................................... 54
6. Glossary ............................................................................................................ 59
7. References ........................................................................................................ 63
Appendix One: Evidence of progress in meeting NSF Quality Requirements . 66
Table 1. Summary of progress against all Quality Requirements ............................. 67
Appendix Two: Membership of the Advisory Group .......................................... 87
Appendix Three: Policy Digest ............................................................................ 88
Appendix Four: Who’s Involved in neurological services ................................. 92
Appendix Five: Continuity and Outcomes .......................................................... 94
Appendix Six: Useful Resources ......................................................................... 97
A Life More Ordinary - Foreword
FOREWORD
"Nothing about us without us"
In 2004 the Department of Health (DH) allocated £2 million to support research
focusing on the impact of a National Service Framework for Long-Term Neurological
Conditions (LTNCs). One of the first actions was to set up a stakeholder Advisory
Group to steer the project.
Determined to ensure the meaningful input of people who use services from the
beginning, the Group included three people with direct personal experience of
impairment and two carers; together these five people made up a quarter of the
total membership. From the start it was considered essential to make sure the voice
of those who receive services and their carers was loud enough to be heard:
“… it did feel that we were genuinely an important part of the process and I am
convinced that the involvement of service users made a real difference to the form,
quality, and focus of the research projects selected and supported." (Conrad)
Although elsewhere progress is being made in the field of patient and public
involvement (PPI), it is still rare for service users to be fully involved right at the
beginning of a project and even rarer for them to be in large enough numbers to
make a real difference:
"As someone with a rare neurological condition, which I have had for over sixty
years, the opportunity to be involved in research, at any level, isn't that frequent."
(Sandra)
It says something about our belief and commitment that, eight years on, we are all
still involved with the Advisory Group. This has taken considerable effort, but we feel
it has been worth it. We have played a full role in the initiative through taking part
in:
•
•
•
•
•
•
•
•
•
drafting the research questions for initial expressions of interest;
selecting outline proposals to be developed for presentation;
selecting proposals to be commissioned;
carrying out lay peer reviews for some proposals;
monitoring the research process at six monthly intervals for five years;
meeting with researchers annually;
reviewing completed funded projects;
contributing to the development of the final report;
identifying procedures for dissemination of the research findings.
"I felt that my contributions were valued equally with other members of the Advisory
Group and made a difference to the way the project was implemented… We have
used our life experiences to enrich the research process making sure that disability
1
A Life More Ordinary - Foreword
was represented in the research projects as being a result of society's structures
rather than individual illness. I am sure that our involvement with the researchers
has made a difference to the way they think about PPI and its value. We have raised
important issues and have added value to the research reports." (Christine)
Care was taken to make arrangements that enabled us to be fully included:
"Meetings were always arranged with full access including communication needs
and location, being of primary consideration. … I have received full payment for my
expenses together with an attendance fee, paid at INVOLVE recommended rates."
(Christine)
When we were not able to get to meetings other ways were found to enable us to
take part, including videoconferencing:
"However, modern technology allows participation in other ways and anyone who
feels they have a contribution to make to improving services by whatever means
should be encouraged to do so." (John)
There is no doubt that we have found the experience to be positive and rewarding.
“It could be the most important thing that anyone might do." (John)
“I learnt a lot about other neurological conditions and services and have been able to
share this with others and am now involved with a local disability group." (Gillian)
“The work of the Advisory Group provides an important model of how to achieve
patient and public involvement (PPI) in all aspects of research." (Christine)
We hope that the research projects' findings will help to influence future policies,
procedures and practice in the delivery of health and social care services.
Christine Barton
Gillian Chedzoy
Conrad Hodgkinson
John Holt
Sandra Paget
Experts by experience
LTNC RI Advisory Group March 2012
2
A Life More Ordinary – Executive Summary
EXECUTIVE SUMMARY
•
The ten studies in the Long-Term Neurological Conditions Research Initiative
(LTNC RI) were commissioned to update and extend the available evidence on
the nature, quality and outcomes of care for people with Long-Term Neurological
Conditions (LTNCs) in England. They set out to provide a robust evidence-base
to inform all those working to improve the quality of services and care.
Main findings – service provision
•
The main feature of the overall service picture that emerges is one of the uneven,
patchy nature of current service levels across the whole pathway for people with
neurological conditions. There is inequity both geographically and with regard to
specific conditions, particularly in the availability of specialist healthcare and
social care support - both key improvement areas for the National Service
Framework (NSF) for LTNCs.
•
Overall, a few aspects of service delivery, including treatment and early
rehabilitation, appear satisfactory while other areas, such as continuity and
coordination of ongoing care, family support, provision of information, vocational
rehabilitation and end of life care, emerge as much less so. There are specialist
neurological services demonstrating pockets of excellence, but these are not
universally available to all who need them.
•
Commissioning intelligence appears variable and joint commissioning planning
arrangements did not always take LTNCs fully into account. Joint working
between health and social care and between different parts of the health sector
was limited, due to incompatible information systems and poor communications.
•
Community Inter-disciplinary Neurological Rehabilitation Teams (CINRT) and
specialist nurses play crucial roles in helping to ensure continuity and coordinating care. Voluntary organisations often lead and establish specialist nurse
services.
•
Access to specialist services (physiotherapy, occupational therapy and speech
and language therapy) appears satisfactory, although they are usually time
limited which restricts continuity. Access to day opportunities, psychological
support and vocational rehabilitation are more problematic.
3
A Life More Ordinary – Executive Summary
Main findings - service users’ and carers’ experiences
•
Service users and carers report that there are some fundamental problems still to
be addressed, although there is evidence of some satisfaction with services –
more so with health than with social care. Overall there is confusion and
uncertainty about who co-ordinates care, particularly at times of transition – from
child to adult, or at the end of life.
•
The experience of feeling in control and having choice in care was variable, with a
majority saying they did not have a personalised care plan and support to selfmanage. The use of Direct Payments or personalised budgets was not
widespread. Where they were not being used there was evidence that more
information about care options was required and that the additional
responsibilities were daunting for some service users and carers.
•
Both service users and carers reported that their opportunities for work and social
contact were restricted by lack of information, inaccessible facilities, attitudinal
barriers and/or lack of practical support. Support for entering or continuing in paid
employment was seen to be particularly limited.
•
The studies reveal the extent to which care is provided by informal carers. They
found that three-quarters of those being cared for needed 'significant help' due to
physical impairments, hidden impairments such as cognitive difficulties, or both.
On average, caring activities were reported to take up 11.6 hours per day - over
80 hours a week, but despite this their role was often not recognised, with few
receiving assessments in their own right. Carers valued equipment to help with
caring tasks, but would have liked more information and advice. They also used
respite and replacement care services. It was found that replacement care would
be more widely taken up, to enable carers to work, if levels of knowledge and
competence in neurological conditions among care staff could be improved.
•
The majority of participants from BME groups considered the services they
received were fair and equitable.
Main findings - costs
•
The research shows that during the study period 2004-2008 the largest single
formal care cost was hospital in-patient care. There was also some evidence of
cost differentiation between groups or conditions. The highest costs for inpatient
and/or residential care, for example, were incurred by those in the youngest (1729) age group, most with sudden onset conditions. In contrast, the largest
numbers of those spending time in in-patient/residential care were those with
progressive conditions in the 50-69 age groups.
4
A Life More Ordinary – Executive Summary
•
Primary care data showed a 60% increase in medication costs and a more than
20% increase in consultation costs over this period, due to the progressive nature
of the health conditions. The costs of secondary care were shown to vary
according to the specific health condition, with no significant trends discernable
over time.
•
Social care budgets similarly varied according to diagnosis, with people living with
different conditions requiring different levels of support, equipment and
technology. The studies revealed how the balance of costs for social care shared
between the state and the individual was different for a range of services.
•
The evidence indicates that responsibility for providing care is increasingly taken
on by informal carers. It can be seen as an ‘inverse cost curve' which is likely to
be steepest for those caring for people with progressive conditions involving both
physical and hidden impairments, and for those nearing the end of life.
•
There is strong evidence to demonstrate that health-related quality of life is worse
for people with neurological conditions and their carers than it is for the general
adult population. It was also found to be the case that the health and well-being of
carers can be worsened by poor quality services. This can have cost
consequences for formal care providers. It was also found that 2 out every 5
carers had stopped, or reduced, paid employment or study to take on the caring
role, but a third would have continued in employment if the support they needed
had been available.
Implications for practice and policy
•
The model of continuity presented by Bernard et al (2009) describes the elements
of relationship continuity, management continuity, information continuity and
continuity of social context and personal agency and is used as a framework to
discuss what works well for people with LTNCs and their carers.
•
Relationship continuity is facilitated by:
o Ready access to CINRTs, specialist nurses, responsive GPs, day care
opportunities, supportive relatives and active local voluntary
organisations;
o Effective multi-disciplinary team working and good information and
communication systems in place;
o Establishing a ‘communicative space’, as described by Cook et al
(2011), which gives validity to allocating time for staff and patients (or
service users/ carers) to build relationships and trust;
o Ready access to a named worker.
5
A Life More Ordinary – Executive Summary
•
•
Management continuity is facilitated by:
o Educating all those involved and good communications between the
health professionals and the wider community;
o Good continuity of care during the transition between children and adult
care afforded by specialist centres;
o Good communications between specialist LTNC Vocational
Rehabilitation (VR) services and employment support organisations;
o Integrating services where appropriate. For example, Leigh et al (2011)
cited a case for developing specialist short-term integrated palliative
care (SSIPC), where neurological services work closely with palliative
care teams to provide specialist input;
o Care co-ordination ‘over time, over services and over sectors’.
•
Information continuity is facilitated by:
o Good data collection, analysis, communication and consultation
systems;
o Compatible information and record-keeping systems;
o Awareness and relationships between people in different organisations
and professional groups;
o A culture of inclusive practice and facilitation of communicative spaces
which enable mutual information exchange between service users and
staff;
o Access to self-management, or impairment education programmes and
peer support groups;
o Information that is available via a range of channels and formats.
•
Continuity of social context and personal agency is facilitated by:
o Service users and carers as equal partners in planning treatment and
care;
o Personalised support that gives people real choice;
o The right equipment and adaptations to a person’s home;
o A continuous process of education about the nature of ‘inclusive
practice;
o Improved capacity building, partnership working and staff training.
The research indicates that people with LTNCs and their carers require the
following outcomes:
1. To be better supported in getting a diagnosis, adjusting to and managing the
condition – good continuity in healthcare;
2. To be able to get on with the “ordinary business of everyday life” and to be
better supported in doing so – good continuity in social care;
6
A Life More Ordinary – Executive Summary
3. To have increased opportunities to participate in, and contribute to, society on
equal terms – improved social and economic inclusion.
Recommendations are made for meeting the outcomes as follows:
1. To be better supported in getting a diagnosis, adjusting to and managing
the condition – good continuity in healthcare
• Establish Community Inter-disciplinary Neuro-Rehabilitation Teams (CINRTs)
as one of the core health-care components that ensures continuity;
• CINRTs to have strong links to other community, social work and voluntary
organisations, housing, equipment, counselling, education and employment
services;
• CINRTs to lead in developing education and awareness-raising programmes
for the local community;
• Ongoing investment in CINRTs’ staff development to increase knowledge and
understanding of neurological conditions, nurture inclusive practice and a
culture of close working relationships between different agencies.
2. To be able to get on with the “ordinary business of everyday life” and to be
better supported in doing so – good continuity in social care
• Ensure that on referral, and onwards, service users have a single point of
contact through ready access to community-based nurse specialists, key
workers or other facilitators, such as social workers or occupational therapists;
• There are well-established preventative services and those that support
people with LTNCs to self-manage;
• People with LTNCs and their carers receive personalised services and they
are offered the option to use an individual budget or equivalent;
• Information, advice and support to use personalised budgets to purchase or
rent equipment as well as care services are made available;
• There is easy access to user-led organisations that support independent living
• There is a range of flexible options for high quality replacement care and
respite care;
• Ongoing investment in staff development to increase knowledge and
understanding of neurological conditions, nurture inclusive practice and a
culture of close working relationships between different agencies;
• There is a service culture that ensures strong partnerships and effective
communication systems between different agencies and settings.
3. To have increased opportunities to participate in, and contribute to,
society on equal terms – improved social and economic inclusion
• Prioritise the development of opportunities for peer support and social contact,
personal development, gainful occupation, leisure pursuits and help with
finding employment;
7
A Life More Ordinary – Executive Summary
•
•
•
Ongoing investment in staff development to increase knowledge and
understanding of neurological conditions, nurture inclusive practice and close
working relationships between different agencies;
Innovation and leadership are needed to improve access to vocational
rehabilitation or other employment support services;
Public sector bodies should prioritise strong partnerships and support for
voluntary and third sector organisations.
A diagrammatic model – the TEAR approach - is presented to encapsulate the
essential service elements required for people with LTNCs and their carers to meet
these outcomes, and, from this emerge summary checklists for commissioners and
planners, providers and practitioners, educators and workforce planners and
voluntary and third sector organisations.
8
A Life More Ordinary – Introduction
1.
INTRODUCTION
This Overview Report provides a summary of the main findings from the Longterm Neurological Conditions Research Initiative (LTNC RI). The Initiative was
funded by the Department of Health's Policy Research Programme (DH PRP)
in 2006, following the launch of the DH National Service Framework (NSF) in
2005. The individual studies making up the Initiative were selected in open
competition and assessed by external scientific referees. The Department was
advised at all stages of the research process by an independent expert group,
including people with experience of long-term neurological conditions and their
carers (see: Appendix Two for membership of the Advisory Group).
1.1. About this report
The Executive Summary includes hyperlinks to relevant text in the main body
of the report for easy reference (on-line and PDF versions only).
Chapter 2: presents the background to the research initiative and includes
links to individual research reports in Table 1.
Chapter 3: presents the main findings from all the studies.
Chapter 4: discusses the implications of the findings for policy and practice.
Chapter 5: includes conclusions and key messages.
Unusual terms and acronyms used in the report are hyper-linked to the
Glossary at the end of the document (on-line and PDF versions only).
Additional information, in the form of summary tables, is presented in the
Appendices, beginning with an ‘at-a-glance’ table of evidence of progress from
the studies in respect of the eleven NSF Quality Requirements and concluding
with details of useful resources in Appendix Six.
The full report can be downloaded from www.ltnc.org.uk or read on-line.
9
A Life More Ordinary – Purpose & Scope of Research
2.
PURPOSE AND SCOPE OF THE RESEARCH
The ten studies in the LTNC RI were commissioned to update and extend the
available evidence on the nature, quality and outcomes of care for people with
long-term neurological conditions in England. They set out to provide a robust
evidence-base to inform all those working to improve the quality of services
and care.
Within this broad research agenda, the more specific objectives of the LTNC
RI were to:
•
establish a baseline picture against which to assess progress on the
objectives of the NSF for Long-term Conditions and to examine factors that
assist, or hinder, implementation and develop tools to assist in evaluation;
•
identify the extent of met and unmet need on the part of those living with
long-term conditions and their carers, including those needs that are
condition-specific as well as those that are common across conditions;
•
describe and evaluate the impact of new service initiatives and
technologies, including the NSF itself, and those designed to improve the
management of long-term neurological conditions.
The research studies focus on working-age adults and their carers, including
at significant life-stage transition points. They are of two broad types. Some
set out to span the field, providing a generic overview of the shape (nature/
delivery/coverage/cost) of current services, (Bernard et al, 2010; Playford,
2011; Hoppitt et al, 2011) and the experiences and needs of those using them,
and their carers (Fitzpatrick et al 2010; Jackson et al., 2011a) at a particular
point in time.
Others focus on selected aspects of the field in greater depth, casting stronger
light on particular issues and experiences. These include:
•
•
key life-stage experiences, such as transition to adulthood (Abbott and
Carpenter, 2009) and end of life (Leigh et al, 2011);
the experience of living with specific health conditions, including
Duchenne Muscular Dystrophy (DMD), Parkinson’s Disease (PD), Multiple
11
A Life More Ordinary – Purpose & Scope of Research
System Atrophy (MSA) and Progressive Supra-nuclear Palsy (PSP)
(Abbott and Carpenter, 2009; Leigh et al, 2011);
•
specific services, such as fitness enablement (Dawes et al, 2010) or
replacement and respite care for carers (Jackson et al., 2011b);
•
wider service approaches such as Cook and Atkin’s focus on inclusive
practice (2011).
The two types of studies provide us with different, but complementary,
perspectives. The ‘overview studies’ map out the broad features of service
provision and use identifying common features or tendencies. Involving large,
representative samples, their findings are likely to be generalisable across the
field. The 'spotlight studies’, in contrast, aim to increase our understanding
of the particular experience of specific conditions or aspects of service
provision, using smaller samples, in--depth case studies and naturalistic
research methods. Together, the LTNC RI studies provide a 'snapshot' of the
nature and impact of existing services some five years on from the launch of
the NSF for Long-term Neurological Conditions, so providing a comprehensive
baseline against which to assess future progress.
Final reports from each study are available to download from our web-site
(www.ltnc.org.uk), where links are provided to the research teams’ own academic
web-sites.
12
A Life More Ordinary – Purpose & Scope of Research
Table 1. The Studies in the Long-term Neurological Conditions Research Initiative
Dates
Title
Researchers
Methods
2007- 2010
The needs and experiences of
services by individuals with
long-term progressive
neurological conditions, and
their carers
Fitzpatrick et al.
University of
Oxford
Overview study. Literature
review and national
benchmarking survey
2007- 2010
Integrated Services for People
with Long-term Neurological
Conditions: Evaluation of the
Impact of the National Service
Framework
Bernard et al.
University of York
Overview study. Literature
review, national benchmarking
survey and multiple case
studies
2007- 2009
Transition to Adulthood for
Young Men with Duchenne
Muscular Dystrophy and their
Families
Abbott and
Carpenter.
University of
Bristol
Spotlight study. National
survey and face-to-face
interviews
2007- 2010
Long-term Individual Fitness
Enablement (LIFE) study
Spotlight study. Pilot
randomised controlled trial
2007- 2011
Defining the palliative care
needs of people with late-stage
Parkinson's Disease, Multiple
System Atrophy and
Progressive Supranuclear Palsy
Dawes.
Oxford Brookes
University
Leigh et al.
Kings College
London
2009- 2011
Mapping Vocational
Rehabilitation services for
people with long-term
neurological conditions
Playford et al.
University
College London
Overview study. Expert
panel, national survey,
multiple case studies and indepth interviews
2009- 2011
A case study of the impact of
inclusive practice in NeuroRehabilitation /Neuro-Psychiatry
services
Cook and Atkin.
Northumbria
University
Spotlight study. Action
research, single case study
2007- 2011
(2011a)
Support for carers: an
investigation of support needs
and the cost of provision
Jackson et al.
Kings College
London
Overview study. Literature
review, national survey and
longitudinal study
2009- 2011
(2011b)
Carers of people with LTNCs
and the provision of
replacement care
Jackson et al.
Kings College
London
Spotlight study. National
survey and face to face
interviews
2009- 2011
Review of the Epidemiology and
Service Use in Rare LTNCs
(RESULT) study
Hoppitt et al.
University of
Birmingham
Overview study. Systematic
review
13
Spotlight study.
Longitudinal study
A Life More Ordinary – Key Findings
3. KEY FINDINGS
3.1
The Shape of the Services
3.1.1 The overall picture
The absence of a comprehensive baseline picture at the time of the NSF for
Long-term Conditions makes it impossible to accurately assess the extent of
progress achieved since its launch. However, mapping the evidence from the
LTNC RI studies against the NSF Quality Requirements (see: Appendix One)
gives some indication of current areas of relative strength and weakness.
Overall, a few areas of service development, including treatment and early
rehabilitation appear satisfactory while other areas, such as continuity and
coordination of care, family support, provision of information, vocational
rehabilitation and end of life care, emerge as much less so. There are
specialist neurological services demonstrating pockets of excellence, but
these are not universally available to all who need them.
The main feature of the overall service picture is one of the uneven or patchy
nature of current services. There is inequity both geographically and with
regard to specific conditions, and this is particularly found to be the case in
respect of the availability of specialist healthcare and social care support both key improvement areas for the NSF LTNC (Fitzpatrick et al, 2010;
Bernard et al, 2010; Hoppitt et al, 2011). The factors contributing to this
unevenness of service provision are complex and reflect the historical status
of LTNCs as a highly specialised domain of healthcare. This problem was
clearly identified in the NSF document (DH, 2007) and, in this respect at least,
the evidence collected here does not indicate consistent improvement since
that time.
15
A Life More Ordinary – Key Findings
3.1.2 Commissioning behaviour
Overview and spotlight studies alike identify lack of effective, 'joined-up'
commissioning, particularly between health and social care bodies, but also
within the health service itself. The evidence suggests this is resulting from
lack of continuity across organisational and/or sector boundaries, cultural
barriers between delivery organisations and professional bodies, incompatible
information systems, inconsistent resources and variable eligibility criteria
(Abbott and Carpenter, 2009; Bernard et al, 2010; Jackson et al. 2011;
Playford, 2011; Hoppitt et al, 2011; Cook and Atkin 2011; Dawes, 2010).
The quality of commissioning intelligence appears variable. Bernard et al’s
survey of PCTs (2010) reveals generally poor awareness of the extent of
LTNCs and service needs at local level and of how demand is managed.
Under half of PCTs (47%) systematically recorded the number of people with
LTNCs in their populations and only one third recorded all LTNCs. Nine out of
ten Trusts (89%) did not know how many people in their area had
comprehensive care plans. This lack of awareness appears to be particularly
acute for the rarer neurological conditions (Hoppitt et al, 2011).
Evidence of integrated commissioning or planning across the health and social
care sectors is mixed. Bernard et al’s survey reveals that almost threequarters of PCTs had joint commissioning arrangements in place in 2008,
but that the majority (62%) of these were informal in nature. Just over one in
ten (12%) had formal arrangements with joint accountability or pooled
budgets. Under half (44%) had completed a Joint Strategic Needs
Assessment (JSNA) that referred to LTNCs generally or specifically. Half had
written action plans to implement the NSF (including integration); although
very few (5%) appeared to have been implemented effectively. Two-thirds had
established cross-sector implementation groups, the majority (88%) of which
were operational, with over two-thirds (68%) of these actively involving service
users or carers.
16
A Life More Ordinary – Key Findings
3.1.3 Service co-ordination
The evidence from both overview and spotlight studies suggests that joint
working between health and social care sectors remains limited, again inhibited
by poor communication and lack of shared, or compatible, intelligence (Bernard
et al, 2010; Abbott and Carpenter, 2009). There were also problems in the
coordination between health care services, with a lack of interdisciplinary working
and poor care coordination identified in many hospital settings (Hoppitt et al,
2011; Bernard et al, 2010). There was evidence of formal links between
emergency departments and neuro-specialists (including tertiary centres),
however, which provided clear pathways to community rehabilitation and support.
This was also the case for specialist rehabilitation units.
Community Inter-disciplinary Neurological Rehabilitation Teams
(CINRTs) were found to play a key role in ensuring continuity and coordination
of care, including liaising with housing services to secure appropriate
accommodation and facilitating access to specialist equipment or adaptations
(Bernard et al, 2010). Nearly three quarters (73%) of PCT respondents
employed more than one CINRT, although the majority only covered people
with specific conditions (e.g. head injury) and under half included all LTNCs.
Both overview and spotlight studies (Bernard et al, 2010; Cook and Atkin
2011; Abbott and Carpenter 2009; Jackson et al, 2011b) indicate that nurse
specialists can be crucial in co-ordinating services and facilitating continuity
of care. However, although the nurse specialist role was found in most (93%)
PCTs responding, only a minority of PCTs (20%) covered all LTNCs and
provision was uneven across neurological conditions. Only half of responding
PCTs reported providing epilepsy nurse specialists, for example, while over
three quarters were providing nurse specialists for those with Multiple
Sclerosis (MS) (78%) or Parkinson’s (PD) (79%), both conditions with much
lower prevalence rates. 1 Where CINRTs or nurse specialists were not
1
The prevalence rate for epilepsy is 500/100,000 compared to only144/100,000 for MS and
200/100,000 for PD (Parker, 2010, p167).
17
A Life More Ordinary – Key Findings
available, researchers found no evidence of alternative models of care coordination (Bernard et al, 2010).
3.1.4 Specific services
The overview studies indicate that community services providing opportunities
for social interaction, leisure and community activities, access to peer
support, information and advice were limited and uneven (Bernard et al, 2010;
Jackson et al, 2011a; Fitzpatrick et al, 2010). The majority of day care
services, for example, were for people with specific health conditions, such as
head injury or stroke. These studies also highlight the significant role of local
impairment-specific support groups in the delivery, and sometimes planning
and commissioning, of services (Bernard et al, 2010; Fitzpatrick et al, 2010).
Under one third (29%) of the participants in Jackson et al’s (2011a) study had
received community rehabilitation or day care (on average six times a
month) in the year before the survey. Around half (51%) had contact with outpatient therapy services of one kind or another, although the extent to which
their on-going needs were being met is unknown. A similar picture was found
in Jackson et al’s more in-depth study (2011b). Both Bernard et al (2010) and
Jackson et al (2011a) found the provision of psychological support for
people with long-term neurological conditions or their carers to be particularly
scarce, with problematic referral systems and long waiting lists. Nearly twothirds of PCTs (63%) surveyed described these services as ‘very difficult’ or
‘difficult’ to access (Bernard et al, 2010).
Access to physiotherapy services, however, was identified as being good.
Over nine out of ten PCTs in Bernard et al’s study (2010) considered that
neuro-physiotherapy was easily available, either via out-patient or community
services, although over half indicated that it was time-limited and based on
treatment goals, rather than solely on patient need. They were equally divided
on whether service users were able to self re-refer, following discharge.
18
A Life More Ordinary – Key Findings
Bernard et al (2010) also report that occupational therapists (OTs) with
expertise in neurology were employed in the majority (82%) of PCTs
surveyed, most commonly as part of a CNIRT. As with physiotherapists,
however, half offered time-limited services, with just under half reporting that
service users could re-enter without a referral. Speech and language
therapy was provided in nearly all (94%) PCTs studied, but usually as an
additional, stand alone, service. In nearly four out of every ten (38%), this was
also time-limited, with service users being able to self-refer following discharge
in only around half of cases (Bernard et al, 2010).
Playford (2011) describes vocational rehabilitation (VR) provision as
‘fragile’, citing funding difficulties and inadequate levels of trained staff,
compounded by lack of clarity about who should commission VR and limited
awareness of the longer term benefits it offers. Some local authority areas had
restricted funding to provide or support day services that might offer VR
services, but overall, they were more typically provided by condition-specific
voluntary sector organisations (Bernard et al, 2010).
However provided, most of the VR services identified by Playford (2011) were
for people with sudden onset conditions, such as traumatic brain injury and
stroke, and provided support to help people return to an existing job or find a
new one. One third of the services were 'pan-disability' in nature, and, of those
that were focussed on LTNCs four were condition-specific.
While the majority of services offered long-term follow up, Playford found that
most had waiting lists of between two and four months, suggesting they were
working pretty much to capacity, with limited ability to respond in a crisis.
Training for staff delivering vocational rehabilitation appeared to be particularly
limited: nearly a third (30%) reported they had never received VR training
(Playford, 2011).
19
A Life More Ordinary – The User and Carer Experience
3.2
The User and Carer Experience
3.2.1 Diagnosis and care management
In general the overview studies indicate that although getting a diagnosis may
take longer than for many medical conditions some aspects of condition
management appear satisfactory. Fitzpatrick et al (2010), for example, found
that two thirds (66%) of respondents in their service user survey who were
able to provide an estimate, waited less than six months between consulting a
GP and seeing a hospital specialist and 34% appeared to wait six months or
longer. Overall, around two-thirds (65%) received a definite diagnosis within a
year. Hoppitt et al (2011) indicate that obtaining a diagnosis can be much
lengthier in the case of rarer neurological conditions, as more prevalent
conditions need to be eliminated first. The mean time to diagnosis for Multiple
Systems Atrophy, for example, was three years, compared with six months for
Huntington's Disease.
Fitzpatrick et al (2010) also indicate that the majority of the service users in
their study did not feel they got enough information at the time of diagnosis.
In particular, only just over one quarter (27%) felt they received enough
information about possible medication side effects. Nevertheless, both
Fitzpatrick et al and Jackson et al (2011a) report that a majority of their
respondents were (or had recently been) in contact with a health professional
about their neurological condition.
Overview and spotlight studies alike indicate that specialised neurological
services, where available, were well regarded by those who use them
(Fitzpatrick et al, 2010; Hoppitt et al, 2011; Abbott and Carpenter, 2009; Cook
and Atkin, 2011). Bernard et al (2010) identify specialist expertise as a
common feature of those services that were rated highly by service users, with
ongoing support from nurse specialists being particularly valued. Nearly all the
participants in Hoppitt et al’s study (2011) reported that they had used a
specialist rehabilitation service in the previous 12 months.
21
A Life More Ordinary – The User and Carer Experience
The experience of generalist services was mixed. Fitzpatrick et al report that
under half (46%) of participants felt their neurological needs had been met
when in hospital for an unrelated problem. When admission was related to the
neurological condition 2 40% considered that their needs had been met.
Hoppitt et al’s findings (2011) indicate over two-thirds (69%) of their sample
felt that hospital staff met the specific needs of their condition either ‘quite’ or
‘very' well. Their evidence indicated that some conditions, such as Charcot
Marie Tooth disease (CMT), may be less well-understood. Jackson et al
(2011a) found carers lacked confidence in generic advice services, when they
were caring for someone with a rare neurological condition.
Satisfaction was generally low in respect of the co-ordination of services.
Both Jackson et al (2011a) and Fitzpatrick et al's overview studies (2010)
found that only around a quarter of service users or carers felt that health and
social services were working well together in providing care. Both studies also
reported that only around a third of respondents felt there was a single
professional co-ordinating their care, a finding supported by Abbott and
Carpenter (2009) and Hoppitt et al (2011). Hoppitt et al found, however, that a
named care coordinator was more frequently provided to people with the more
severe, life-limiting conditions.
3.2.2 Support for daily living
Families in Abbott and Carpenter’s study (2009) reported that assessments
for daily living support, via children’s or adult social services, were intermittent,
with those that were undertaken not always followed through. Hoppitt et al
indicate that under one third of those living with rarer conditions received an
assessment, although mobility assessments were more frequent for some
conditions such as Progressive Supra-nuclear Palsy (PSP).
2
Actual numbers however were quite small: 20% of the main sample (n =500 ) had been in
hospital in the previous year for a problem unrelated to their neurological condition and 15%
(n =383 ) specifically for the neurological condition (Fitzpatrick, 2011:71).
22
A Life More Ordinary – The User and Carer Experience
Fitzpatrick et al's overview study (2010) found, uniquely, that the majority of
service users surveyed were not offered help with personal care or housework
from social services, or they received it from other sources. Their study
showed that this presented problems for 11% (n=272) of the sample in respect
of housework and 3.9% (n=95) for personal care. More generally, they found
that four in ten participants felt that social services staff understood their
needs and that six in ten felt that hospital consultants did so.
Overview studies indicate fairly extensive use of equipment and home
adaptations. Hoppitt et al, for example, found that seven out of ten of those
living with rarer conditions had a home adaptation and over three-quarters
(78%) had received equipment. Many fewer (29%) had received Telecare
3
equipment. Abbott and Carpenter's in-depth study found the majority had
sufficient equipment or had no difficulty in securing additional equipment
needed. However adaptations were more difficult to arrange. Under half (49%)
had had homes adapted and over one in ten (12%) had not been able to
secure the finance needed to do so.
Occupational therapists (OTs) were generally seen to play a key role in
obtaining the right equipment and home adaptations for carers and families in
Jackson et al’s (2011a) overview survey of carers. Abbott and Carpenter’s
(2009) more in-depth study however found the families' experiences were
variable, with the majority finding OTs supportive but a small minority
perceiving them as obstructing, rather than facilitating provision.
Overall, both overview and spotlight studies indicate general satisfaction with
the provision of equipment (Fitzpatrick et al, 2010) and adapted
accommodation, once provided (Abbott and Carpenter, 2009). However,
excessive waiting times were reported in some areas for building adaptations
3
Equipment refers to products to help with daily living activities, such as bathing or using the
toilet, mobility items for the home, special beds or chairs. Telecare refers to a range of
electronic aids that can alert carers or a Call Centre if a person is at risk and needs
assistance but is not in a position to summon help themselves. Telecare can be set up in
different ways, e.g. by monitoring activity which is linked to alarm call systems.
23
A Life More Ordinary – The User and Carer Experience
and equipment (particularly wheelchairs) and also for appropriate
accommodation (Bernard et al, 2010; Abbott and Carpenter, 2009).
3.2.3 Choice and control
The overview studies provide a similarly mixed picture in respect of the extent
to which research participants and their carers considered that they had
choice and control over the provision of services. Fitzpatrick et al (2010) found
that four out of ten felt they were involved as much as they would like in their
care, or that their preferences had been taken into account in the planning of
their care. Only just over two out of ten (22%) were aware of having a
personalised care plan.
Under one third (27%) considered they had been given enough support by
care professionals to develop effective self-management strategies. The lack
of timely information to underpin choice and control was noted by both Abbott
and Carpenter (2009) and Hoppitt et al (2011). Overall, the experience of
person-centred care was evident across the studies although it was revealed
as somewhat uneven with very few professionals identified as taking an
identified care-coordinating role (Abbott and Carpenter, 2009).
Direct Payments are considered central to increased choice and control (DH,
2007) and the LTNC RI evidence suggests that, when they worked, they were
seen to enhance control over timing and provider, and to increase the
flexibility of care provision. Pooled data from Jackson et al’s two studies
however found less than a quarter (23%) of study participants and very few
(7%) of their carers had received these payments. Those who had, used them
to access a wide range of services, both for the adult they cared for and
themselves (2011b).
Overview (Jackson et al, 2011a) and in-depth (Abbott and Carpenter, 2009)
studies indicate that many found the process of using Direct Payments
complex and time-consuming. Around a third of the families in Abbott and
Carpenter's study reported using a Direct Payment and none of the young
24
A Life More Ordinary – The User and Carer Experience
men had used them in their own right. In part this was due to lack of choice, or
poor information about the available service options; in part it was due to the
payments being seen to involve additional responsibilities and effort.
3.2.4 Economic and social inclusion
Overview and spotlight studies alike found that services offering opportunities
for social and economic engagement, such as peer support, social and
leisure activities and skill development were valued by many service users,
and were seen to be an important element in community rehabilitation
(Bernard et al, 2010; Jackson et al, 2011b; Dawes, 2012; Cook and Atkin,
2011).
Many of the people with LTNCs who participated in the research however
reported that their opportunities for work and social contact were restricted by
lack of information, inaccessible facilities, attitudinal barriers and/or limited
practical support (Abbott and Carpenter, 2009; Dawes, 2012; Jackson et al,
2011b). Good information about available support was seen to be crucial.
Abbott and Carpenter for example found that, while most parents felt they had
enough information about their son’s Duchenne Muscular Dystrophy (DMD),
two thirds did not know enough about the services available or future options
(2009). Dawes (2011) found that people with neurological conditions were
inhibited from using community-based exercise facilities, such as leisure
centres, by the lack of information about safe, effective exercise on the part of
fitness staff and health professionals.
Support for entering or continuing in paid employment was seen to be
particularly limited. Under a quarter (23%) of Fitzpatrick et al's respondents
(2010) had been in paid employment in the previous three years. Just two in
ten of these had received support to stay in, or restart, work, although only a
minority expressed a need for this type of support. Abbott and Carpenter's indepth study of young men with DMD found that only one quarter had ever
worked and, of those who had tried, only two out of ten had received any
support to help them stay in work. Even fewer had received therapy or
25
A Life More Ordinary – The User and Carer Experience
guidance to help them to secure paid employment. Once they had completed
their education, daily life for the majority of these young men was typically one
of social isolation and largely unfulfilled potential (Abbott and Carpenter,
2010).
3.2.5 Support for carers
Both overview and spotlight studies reveal the considerable volume of care
being provided by informal carers. In Jackson et al’s 2011b in-depth study,
nine in every ten participants with LTNCs were rated by their carers as having
complex needs. Their wider survey (2011a) found that three-quarters of those
being cared for needed 'significant help' due to physical impairments, hidden
impairments, such as behavioural difficulties, or both. On average, caring
activities were reported to take up 11.6 hours per day - over 80 hours a week.
Even for those towards the end of their lives, with a symptom burden
comparable to those with late stage cancer, Leigh et al (2011) indicate that the
great bulk of care is provided by informal carers or relatives.
Despite this, around a third of carers (34%) in Fitzpatrick et al's (2010) study
felt their caring role was not recognised or valued by GPs. Under half had ever
had any discussion with professionals about the care they undertook or their
own care needs. Jackson et al (2011a) found evidence of a general lack of
involvement of carers in planning. Over three quarters of the 282 carers in this
study said they needed more help with planning treatment and care for the
adults they looked after than they were receiving.
The research indicates that when carers are separately assessed they are
significantly more likely to receive the services they need (Jackson, 2011b).
However, many carers are still not being identified as having support needs in
their own right. Pooled data across Jackson et al's two studies, however,
reveal that under half (46%) of participants had been offered a separate
assessment and this was true of just over two out of ten (21%) in Fitzpatrick
et al's (2010) study. On balance, carers of adults with hidden impairments,
such as behavioural or cognitive difficulties, were less likely to have been
26
A Life More Ordinary – The User and Carer Experience
offered an assessment than those caring for people with more obvious
physical impairments (Jackson, 2010b).
Both studies by Jackson et al identified a general confusion on the part of
carers about eligibility and a perception that health and social care
practitioners were reluctant to undertake a separate assessment of their care
needs. Not all carers wanted an assessment, however. Fitzpatrick et al found
that only just under a quarter (23%) of those who had not been assessed
would like to have been.
Of those who were assessed, Jackson et al's overview study (2011a) found
that only half were recommended services and two thirds ultimately received
them. Their spotlight study (2011b) found under two out of ten (18%) received
any services following assessment. Fitzpatrick et al report that only one third
of those given a carer assessment found it helpful and that under half (45%)
received a written plan as a result. Over three quarters of the full sample
indicated they needed more help with planning treatment or care, either
currently or in the future. Just under a quarter (23%) felt they needed training
in caring tasks, for example, but none had been provided.
Respite and replacement care were the most common service offered to
carers following an assessment. Jackson et al. (2011a) found that for twothirds of those who had a care plan as a result of a separate assessment, this
addressed the need for respite or replacement care. One third of carers in
Jackson et al's in-depth study (2011b) judged they would have been
housebound, or would have to have been accompanied by the person they
cared for when they went out, had replacement care not been available. Just
one in ten carers in Fitzpatrick et al's national survey had received respite
care, with the same proportion indicating they had not received it when they
needed it.
There were concerns however about the competence of replacement care
staff, particularly in respect of having the skills to support adults with complex
27
A Life More Ordinary – The User and Carer Experience
problems appropriately, including those with psycho-social needs. Jackson et
al indicate that, if these concerns could be assuaged, the proportion of carers
willing to use these services would rise from over half (51%) to over nine out
of ten (91%). Just under half (45%) indicated they would use these services in
order to work, the majority (84%) to take a short break for rest/relaxation and
over half (59%) to take a longer break.
Carers also confirmed the importance of having the right equipment
(Jackson, 2011a; Fitzpatrick et al 2010), but under half (46%) of those they
surveyed felt they had been provided with the equipment needed to help with
their caring tasks. The overview studies indicate limitations in other forms of
essential support for carers, such as information about available services
(Hoppitt et al, 2011; Fitzpatrick et al, 2010). Over half (56%) of the carers in
Fitzpatrick et al's study and three-quarters in Jackson et al's (2011a) survey
reported that they needed more advice and information about the
neurological condition, key health and care professionals and/or available
support.
Overall, contact with health services was good. The majority of carers in
Jackson et al's (2011b) overview study had contact with their GP (73%) or
specialist (81%) in the year before the study, over half (52%) with a therapist
of one kind or another and/or with a practice nurse and a similar number with
a social worker/care assessor. Almost three quarters (72%) considered these
professionals to be their named contact. However, there was general
uncertainty about who was performing the ‘care co-ordinating’ role. Only a
third had an identified case manager or equivalent, responsible for the
planning and co-ordination of care.
Overall there was evidence of satisfaction with services across the studies,
albeit more consistently with health than with social care (Bernard et al, 2010;
Fitzpatrick et al, 2010; Jackson et al, 20011a). It was clear that levels of
satisfaction were greater for some groups of service users/carers and certain
conditions than others (Bernard et al, 2010; Abbott and Carpenter, 2009).
28
A Life More Ordinary – The User and Carer Experience
Despite an apparent lack of awareness on the part of commissioners about
the needs of specific minority ethnic communities, the majority of users and
carers from those minority ethnic communities who participated in the
research studies (Hoppitt et al, 2011; Jackson et al, 2011b) considered the
care services they received to be fair, equal and culturally appropriate.
Services to support key transition points, such as into adulthood (Abbott and
Carpenter, 2010) and towards the end of life (Leigh et al, 2011) could be
particularly difficult to obtain. Abbott and Carpenter found unmet need for
timely and appropriate information on the transition from childhood to adult
services for young men with DMD. Leigh et al found that only just over half
(55%) of those at the end of life and severely affected by Parkinsonian
disorders had contact with a PD nurse, and just over one third (38%) with any
kind of therapist, in the previous three months. Over the same period, just over
one third (34%) had contact from a home care worker and one quarter from a
social worker. Few had access to specialist palliative care services or to timely
psychological support before or after bereavement (Jackson, 2011b).
29
A Life More Ordinary – The User and Carer Experience
3.3
The Cost of Care
3.3.1 Provider costs
Estimates of the costs of health and social care for people with LTNCs and the
cost-effectiveness of services provided were included in several studies, but
no overall picture emerged. Hoppitt et al’s overview study (2011) is
illuminating, although focussed on rarer conditions. This found that the cost of
primary, secondary and social care for those with these conditions increased
over the study period (2004-2008) over and above the rate of inflation.
Jackson et al (2011a) found that the largest single formal care cost is that of
hospital in-patient care, accounting for just under half (46%) of all formal
care costs. A third (n= 96; 34%) of respondents had spent time in hospital in
the previous year. Under one in five (n=50; 18%) had spent time in residential
care in this period and under one in ten (n=19; 7%) had spent time in both
settings. Primary care data showed a 60% increase in medication costs and a
more than 20% increase in consultation costs over this period, due to the
progressive nature of the health conditions. The costs of secondary care
were shown to vary according to the specific health condition, with no
significant trends discernable over time.
Demand on social care budgets similarly varied according to diagnosis, with
people living with different conditions requiring different levels of support,
equipment and technology (Hoppitt et al, 2011). Studies revealed how the
balance of costs for social care was being shared between the state and the
individual for a range of services. Over half of those who received home
adaptations (57%) or equipment (55%), for example, had contributed to the
cost. Just under a quarter (23%) had contributed financially to technological
aids and one third reported paying for other forms of care.
There was also some evidence of cost differentiation between groups or
conditions. By far the highest cost burden for inpatient and/or residential care,
for example, was generated by those in the youngest (17-29) age group, most
with sudden onset conditions. In contrast, the largest numbers of those
30
A Life More Ordinary – The User and Carer Experience
spending time in in-patient/residential care were those with progressive
conditions in the 50-69 age groups (Jackson, 2011a).
For all groups, however, the studies indicate that the responsibility for
providing care is increasingly taken by informal carers, as the condition
progresses. Jackson et al found that, whereas formal care costs fell with the
increased age of the person being cared for and with the duration of the
condition, informal care costs continued to rise in both cases. This ‘inverse
cost curve' is likely to be steepest for those caring for people with progressive
conditions involving both physical and hidden impairments, and for those
nearing the end of life. Leigh et al (2011) found that the bulk (70%) of the care
costs for those needing palliative care was borne by informal (unpaid) carers.
Overall, Jackson et al (2011a) calculated that, for those with multiple caring
roles, informal costs were on average 4.5 times higher than the cost of the
formal care being received.
3.3.2 Personal costs
The research also highlights the significant personal costs of caring for
others. Overview and spotlight studies alike demonstrate that health-related
quality of life is worse for people with neurological conditions and their carers
than it is for the general adult population (Fitzpatrick et al, 2010; Jackson et al,
2011a; Cook and Atkin 2011; Leigh et al, 2011; Hoppitt et al, 2011). Jackson
et al (2011a) found nine in every ten carers reported feeling constantly under
strain, with eight out of ten feeling unhappy and depressed.
Jackson et al (2011a) found that two out every five carers had stopped or
reduced paid employment or study to take on the caring role. A third
indicated that they would want to continue, or increase, their hours of paid
work if their role as carer could be taken on by someone else, in the home or
other settings. It was not only the limited availability of replacement care
options, however, but also the expense of paying for this kind of support that
had forced some carers out of employment. Jackson (2011b), for example,
calculated that the cost of buying replacement care could exceed average
31
A Life More Ordinary – The User and Carer Experience
annual gross earnings by over £8,000 per year (based on £18 per hour, eight
hours a day, five days a week for a 48 week year).
3.3.3 Opportunity costs
Fitzpatrick et al (2010) provide evidence that the health and well-being of
carers can be worsened by poor quality services. They found that negative
experiences with services were associated with poorer health-related qualityof-life scores for both service users and carers. This in turn increased the
demands that carers made on health and formal care services. Failure to
invest in maintaining the ability of carers to provide informal care is thus likely
to have significant cost consequences for formal care providers.
The cost to health and social services of poorly managed and inappropriately
delivered services is also demonstrable (Cook and Atkin, 2011; Abbott and
Carpenter, 2009). The latter found, for example, that young men with DMD
and their families experienced unnecessary hospital appointments and poorly
coordinated services. The costs to the health service of these inefficiencies
(e.g. for travel costs for multiple outpatient appointments or unnecessary input
from professionals) may be considerable. Jackson et al (2011b) also highlight
the wider potential costs to the economy from the 'lost working years' of carers
who are unable to find adequate support to remain in paid work. Assuming a
wide spread of salaries, and based on annual average gross earnings in the
UK of £26,137, they estimate that these lost working years represent potential
lost production to the economy of £235,233 per person per year.
32
A Life More Ordinary – Improving Outcomes
4. IMPROVING OUTCOMES FOR PEOPLE WITH LTNCS
4.1 What the research tells us about improving outcomes
4.1.1 The continuity framework
The NSF for LTNCs proposed better integrated services to ensure that people
with these conditions experience services that are ‘joined up’. The research
however suggests that the broader concept of ‘continuity’ may be more helpful
in understanding and meeting the broad outcomes required by people with
LTNCs and their families. The concept of continuity was developed by
Bernard et al (2010) from an earlier model by Freeman (2007) and is used
here as a framework in which to discuss the main findings from the research
studies and their implications for policy and practice.
Freeman (2007) identified the key dimensions of continuity as: relationship
continuity, management continuity and information continuity. Bernard et al
(2010) add a new dimension of continuity of personal agency and social
context to these. The introduction of this last element brings the important
aspects of autonomy and social equality to the model 4. These dimensions are
not mutually exclusive, but thread through and inter-connect the wide range of
responses that people with LTNCs will require over the course of their lives.
We examine each in turn below before considering how they contribute to
improving outcomes for people with LTNCs.
4
Personal agency is used to mean retaining control over life, managing your own health and
making informed decisions; social context refers to equality of opportunity and citizenship.
Barnard et al (2010)
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A Life More Ordinary – Improving Outcomes
4.1.2 Relationship continuity
Where flexibility, and the responsiveness that often accompanied it, were found
they helped support people’s independence, [and] maintain ‘normality’ in their
current lives and reassured them that future needs could be met.
Bernard et al, 2010, p89
Relationship continuity comprises interdependent elements of long-term,
longitudinal and relational (or therapeutic) continuity. Bernard et al discuss
how the need for regular reviews, having easy ‘ad hoc’ access to
knowledgeable support when necessary and healthcare professionals who
can ‘stand back’ at appropriate times requires a delicate balancing act. They
describe long-term continuity as the provision of uninterrupted care and found
that people felt more able to cope when they were regularly followed up by
specialists who knew them. Most people in their study did not feel well
supported with the kind of intervention, typical of social work and
physiotherapy input, that is provided on an episode-by-episode basis. They
concluded that long-term continuity was more likely to happen when people
had ready access to specialist nurses, CINRTs, responsive GPs, day care
opportunities, supportive relatives and active local voluntary
organisations.
The longitudinal element is described as keeping the number of health
professionals involved in an individual’s care to the minimum, perhaps with a
key-worker acting as a link person. Bernard et al suggest that longitudinal
continuity is more likely to be achieved over time when there is effective
multi-disciplinary team working and there are good information and
communication systems in place.
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A Life More Ordinary – Improving Outcomes
Positive therapeutic relationships were described in a variety of
situations, but a common theme was the value people placed on the
personal rapport and interest in them as a ‘whole’ person.
Bernard et al 2010, p81
The value of relationship continuity is highlighted in many other LTNC RI
research studies (Cook and Atkin, 2011; Jackson et al, 2011a; Abbott and
Carpenter, 2009). The importance of effective communication is particularly
emphasised in Cook and Atkin’s study. Their in-depth analysis of the nature of
communication between professionals and service users indicates the
circumstances in which both are enabled to develop productive and
therapeutic relationships. They suggest that effective communication is
essential to inclusive practice, but is usually perceived as an adjunct to
treatment rather than an integral part of it. They argue that there are
organisational and professional barriers to prioritising good communication as
part of the therapeutic experience, such as organisational pressures to get
people ‘through’ the system and professionals’ perceptions that talking and
listening are not as valid as doing things with, and for, patients. They assert
that working in an inclusive way requires a mechanism they call a
‘communicative space’, which gives validity to spending time to build
relationships and which is “shaped by trust and confidence, mutual respect,
open and honest conversations, where differing perceptions are brought
together and critical reflection takes place with the intention of forging action”
(Cook and Atkin, 2011, p122).
Jackson’s (2011a) study shows that when carers feel they are being listened
to they feel better supported, which has a positive effect on their mental health
and their ability to sustain their caring roles. The importance of ready access
to a named person, key worker, or ‘someone in the care system’, who
knows and understands their situation, is often crucial, particularly at times of
crisis.
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A Life More Ordinary – Improving Outcomes
Abbott and Carpenter (2009) highlight the need for relationship continuity
during transition from children’s to adults’ services. They argue that when
people with LTNCs (not just young men with DMD) are dealing with change
and uncertainty they need consistency and to feel confident that support will
be flexible and appropriate.
4.1.3 Management continuity
People with LTNCs require a range of specialist services at different points in
their lives and stages of their health condition. They are not a homogenous
group and this was recognised in the NSF which used the following typology
to accommodate people’s requirements:
•
People with sudden onset conditions are likely to require acute health
services and then rehabilitation to support their recovery, which could
continue over several years.
•
People with intermittent and unpredictable conditions may require
speedy acute health or specialist input at the time of change and then
rehabilitative support through a period of adjustment.
•
For those whose conditions are progressive or stable (but altering with
age) the changes may be insidious and prolonged, so they may
welcome the opportunity of having health checks and being supported
to adjust or to manage their health as it changes. This will require easy
movement in and out of services and smooth transitions between
different ones for some.
Similarly, the whole of a person’s life is affected by their health condition, and
individuals with a LTNC require those they rely on for support to have
appropriate knowledge, insight and expertise; whether it is to help them stay in
employment, develop personal skills, enjoy a social life or assist with personal
care tasks. Carers also need to feel confident in the quality of replacement
and respite care services available to them and they require knowledgeable,
well-trained care staff. These attributes have been recognised in recent health
and social care policy documents; Equity and Excellence; liberating the NHS
(2010) and The Vision for Adult Social Care Services (2010), which call for
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A Life More Ordinary – Improving Outcomes
‘joined-up’, high quality care. (see: Appendix Three for a digest of relevant
current policies).
Abbott and Carpenter (2009) found that young men, and their families,
appreciated the continuity of care they had received during the transition
between children and adult care afforded by specialist centres, such as
the Muscle Centre in Newcastle, or the neuro-muscular service in the West
Midlands (see: Appendix Six ). They argue that closer working links with other
community organisations would have further enhanced these positive
experiences.
“Exercise helps us to focus on the positive aspects of our mobility”
Person with MS, Dawes 2010, p 9
Dawes (2010) investigated how people with LTNCs can complement and
extend hospital-based physiotherapy services by taking exercise in their local
community fitness centres. She found that, with the right expertise available
(informed fitness specialists and access to physiotherapy advice), people with
LTNCs were able to sustain planned exercise programmes. This required
educating all those involved and good communication between the
relevant health professionals and local fitness centre staff and shows the
value of greater awareness of LTNCs in mainstream facilities.
“When I’m older I want to do mechanics and stuff like that. I’d really like
to do a car up – a race car or something…get my hands dirty and mess
with cars and stuff like that.”
Young man living with DMD, aged 15, Abbott and Carpenter, 2009, p13
Playford’s study (2010) of vocational rehabilitation services (VR) found little
evidence of services designed for people with LTNCs being delivered in either
community or vocational rehabilitation to the standards recommended by the
British Society of Rehabilitation Medicine (BSRM) (BSRM, 2010). She calls for
improved communications between specialist LTNC vocational
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rehabilitation services and employment support organisations so that
people are better able to retain their jobs or return to work.
Leigh et al’s study of the palliative care needs of people with Parkinson’s and
related disorders (2011) found the rapidly progressing nature of some of these
conditions meant the severity of symptoms and care needs were similar to
those of cancer, requiring equivalent levels of expertise. They make a case for
developing and trialling new models of care, such as Specialist Short-term
Integrated Palliative Care (SSIPC), to provide access to neurological
expertise as and when specialist help is needed to tackle problematic
symptoms. This is in accord with recommendations made in End of life care in
neurological conditions - a framework for implementation, published by the
NHS End of Life Care Programme (2011, www.endoflifecareforadults.nhs.uk).
Jackson (2011a) also reports that carers did not trust generic advice services
and felt more confident when they had access to specialist nurses, or
specialist teams, especially when there was close co-operation between
statutory and voluntary services. However, it was not only a matter of
understanding a person’s physical needs in relation to their health condition;
the issue of ‘hidden’ impairments was raised in several studies. Jackson
describes ‘hidden’ impairments as those with a cognitive, behavioural or
emotional dimension. Playford et al also talk about ‘hidden disabilities such as
mild cognitive impairment and low mood’ (p35). This indicates the need for
much better management continuity between different parts of our health and
care systems, requiring increased awareness and more effective working links
between mental health, neurological and social care services.
Bernard et al’s (2010) study shows that care co-ordination ‘over time, over
services and over sectors’ was found to be an essential element of those
services that provided management continuity and were particularly valued by
people with LTNCs. Jackson found that where there was no-one to do this
kind of co-ordination, or help to plan for the future, it became another role that
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carers or family members had to take on in addition to their caring activities
(2011a).
4.1.4 Information continuity
Another integral aspect of continuity is the way, and the extent to which,
information is shared between organisations as well as between
professionals, service users and carers. This requires attention at a number of
levels. At a strategic level commissioners and planners need good data
collection, analysis, communication and consultation systems to keep
them informed about their local populations so that services are
commissioned appropriately in the first place. This was recognised by the
Long-Term Conditions Implementation Team in publishing the 2010 Neurology
Collection (Barr, 2010), a compendium of valuable resources, practical
information and advice for commissioners. It includes the Needs and
Complexity Data Scale (Turner-Stokes, 2008) which can be used to evaluate
services in relation to need (see Appendix 6 for further details).
For cross-sector and multi-disciplinary teams to work effectively there need to
be compatible information and record-keeping systems in place, as well
as good awareness and relationships between people in different
organisations and professional groups.
At an individual level much will depend on the nature and quality of the
relationships that are established between service users and providers. Cook
and Atkin (2011) describe how people with LTNCs and their carers are likely
to be disadvantaged by knowing little or nothing about the implications of the
health condition they are faced with. Conversely, although health
professionals have knowledge of neurological conditions, at the beginning of
an intervention they will know little or nothing about an individual service
user’s life, experience and aspirations. This is another reason that the
‘communicative space’ they describe is important - to help create the right
organisational culture for the relationship between a service user and
professional to flourish on a basis of mutual information exchange.
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Jackson (2011a) also discusses this in respect of carers and describes how
some of them felt that their own need for information was overlooked from the
point of diagnosis onwards. There is the same mutuality of need for
information between carers and professionals in order for carers to share
information about the cared-for person, especially when they hand over their
care to someone else. This was shown to be particularly significant when rare
conditions such as Huntington’s Disease were involved.
Fitzpatrick et al (2010) found that people with neurological conditions did not
generally participate in Expert Patient Programmes. Bernard et al (2010)
however indicate that, when they had access to self-management or
impairment education programmes and peer support groups, where they
could relate to each other’s experiences of a particular impairment, such
initiatives were generally well received. These programmes were valued
because of the information shared as well as the peer support they offered,
although some people also found it difficult to be reminded of the
consequences of progressive conditions and so preferred to avoid, or opt out
of, groups. Such initiatives were usually developed and led by specialist
nurses or CINRTs, with the voluntary sector playing a significant role in
supporting or delivering them.
Carers were fulsome in their praise for the work done by national
voluntary organisations, which often included providing information
about research, new treatments and other topical news items.
Jackson, 2011a, p92
There was recognition by service users that information should be easily
available and appropriate for people with neurological conditions (which may
include communication impairments) but did not always require face-to-face
contact. People with LTNCs commented that they appreciated information
that was available via a range of channels, e.g. via the internet, email,
telephone and leaflets, so they could find it how and when it was required.
National disability charities with a high public profile and internet presence
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were often perceived as trusted sources of information about neurological
conditions which people turned to as a matter of course (Bernard et al, 2010;
Jackson, 2011a,b).
4.1.5 Continuity of personal agency and social context
The two aspects of continuity of personal agency and social context reflect the
extent to which organisations function to promote autonomy and enable social
integration, economic inclusion and participation in everyday life. They are
crucial considerations for health and social care because they highlight the
constraints and barriers that disabled people may still encounter in their daily
lives and communities. These include unreliable transport, inaccessible
buildings and discriminatory attitudes all of which can have a negative impact
on a person’s health and well-being.
Young people did not have much to say about the structure of services,
or the processes of transition and of course this is no surprise. Their
dominant concerns were friendships, their social life, their overall
health, their families, and whatever they were doing day to day.
Abbott and Carpenter 2009, p148
Abbott and Carpenter’s 2009 study demonstrates the importance of continuity
of social context to help young men with DMD to fulfil their potential. They give
an example where care-support arrangements worked particularly well for one
young man who went to university and whose package of care was
commissioned from a care management company and provided by fellow
students. It meant that he had autonomy and was able to take full advantage
of the social life at his university.
Dawes (2010) identified that, in addition to lack of expertise about LTNCs, a
further barrier to using community fitness centres was the lack of accessible,
affordable and reliable transport, particularly in rural areas. The families and
young men in Abbott and Carpenter’s study (2009) also reported what they
found to be insurmountable difficulties with public transport which had stopped
the young men in the study travelling independently of their parents.
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Overview and spotlight studies highlight the extent to which the right
equipment and adaptations to a person’s home can contribute to continuity
of social context. Jackson (2011a) describes how timely provision of
equipment enabled carers to continue with their caring role, especially in the
context of supporting people with deteriorating health conditions. Both Abbott
and Carpenter (2009) and Cook and Atkin (2011) confirm that they make a
positive difference to people’s lives once they are supplied or installed.
With regard to continuity of personal agency Cook and Atkin (2011) describe
the characteristics of effective inclusive practice as those which define the
experience as a shared, mutually respectful, positive and empowering one for
both practitioner and service user. They consider that that inclusive practice is
essential for people with LTNCs and their carers to feel they are equal
partners in planning their treatment and care and they describe the
benefits for individuals’ self-esteem and confidence when they do feel this
way. They conclude that a continuous process of education about the
nature of ‘inclusive practice’ is required for those working with people with
LTNCs to bring about the necessary cultural change for this to be the natural
way of working.
Direct Payments and personalised budgets were introduced as a means of
supporting greater autonomy by providing people with an income to purchase
their care and support. Hoppitt et al (2011) and others (Jackson, Abbott and
Carpenter, Bernard et al) all looked into how well they were being taken up
and used by service users and carers. Their evidence indicates that they are
not universally offered or taken up, but when they are they can be effective (as
in the example of the young student just mentioned). It was also found that
potential users of Direct Payments are not always well informed about what
care and support options are available, which makes it difficult to take this
responsibility on.
Playford’s study (2010) of vocational rehabilitation services (VR) recommends
that money should follow the individual, via personalised budgets or Direct
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Payments, so that they can purchase VR and support with employment in a
way that suits them best. She concludes by calling for improved capacity
building, partnership working and staff training. Such an approach, she
argues, would lead to more personalised support, as recommended by both
the Black and Sayce reviews of specialised employment services (Black,
2008; Sayce, 2011).
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4.2 Building services for the future
4.2.1 Improving outcomes for people with LTNCs
People with LTNCs reported that it was important to feel ‘normal’, to have
a purpose and to be valued as an individual in their own right.
Bernard et al 2010, p104
The studies in this research initiative have given us a clearer picture of what is
needed and what works for people affected by LTNCs. In essence, the
combined research tells us that the following three broad outcomes are
required:
Outcome 1: To be better supported in getting a diagnosis, adjusting to
and managing the condition – good continuity in healthcare;
Outcome 2: To be able to get on with the “ordinary business of everyday
life” and to be better supported in doing so – good continuity in social
care;
Outcome 3: To have increased opportunities to participate in, and
contribute to, society on equal terms – improved social and economic
inclusion.
The individual service components that can help deliver these outcomes will
require a whole-system approach in which people with LTNCs and their
families are as involved as possible from the very beginning. It is not a matter
of providing one element or another – services have to inter-relate and
complement each other, so they have to be planned strategically. People with
LTNCs and their carers need to feel confident that their requirements will be
met in ways that they can trust, that are effective, reliable and easily accessed
and that their expertise in living with the condition is recognised.
We now consider how each outcome can be met before presenting a model to
develop a strategic vision for future services.
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A Life More Ordinary – Improving Outcomes
Outcome 1: Being better supported in getting a diagnosis, adjusting to and
managing long-term neurological conditions – good continuity in healthcare
The diagnosis of a neurological condition is a critical turning point in a
person’s life and it should be the key to unlocking access to the expertise and
support needed to come to terms and live with it. The evidence from this
research initiative indicates that people are waiting considerably longer than
the 13 weeks, cited in Getting the Best from Neurological Services, as the
maximum waiting time to expect from initial GP consultation to seeing a
specialist. (Neurological Alliance, 2006). Getting a diagnosis can take up to
six months; a year or even longer for rarer conditions. Further research and
development work are needed to understand how the factors that contribute to
such delays can be addressed.
There is strong evidence to indicate that Community Inter-disciplinary
Neuro-Rehabilitation Teams (CINRTs), which bring together a range of
relevant health and social care specialists to provide services, are an integral
part of diagnosing, treating, monitoring and managing neurological conditions.
Such a service should be one of the core health-care components that
ensure continuity and would therefore need to provide access to a broad
range of condition-specific services (such as nurse specialists with expertise
in specific health conditions, physiotherapists, occupational therapists, speech
and language therapists, psychological and emotional support, vocational
rehabilitation, palliative care). It would have strong links to other
community, social work and voluntary organisations, housing,
equipment, counselling, education and employment services. It should
play an active role in education and awareness-raising programmes to
support staff development and working relationships across sectors and
agencies.
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Outcome 2: Being able to get on with the business of everyday life and
being better supported in doing so -– good continuity in social care
The evidence is clear that current systems of managing demand for services
have led to pressures to discharge people and close cases as quickly as
possible. As we have seen, people with life-long health conditions require
ongoing care and support that are responsive to change and over time. We
need to ensure that people can rely on having a single point of contact to
turn to as their circumstances change over time.
Currently this role is often assumed by community-based nurse specialists,
or other knowledgeable advisers such as welfare officers from voluntary
organisations, who act as key workers and facilitators. Such positions are
often initiated and established by voluntary organisations in partnership with
specialist health services in response to gaps in provision. The individuals
involved have a wealth of knowledge and expertise to share and are often the
key people who liaise with CINRTs, social services, housing and other
community organisations and help to coordinate services, once an individual
is discharged from a health or rehabilitation service.
Social services have a vital role to play in preventative services that enable
people with LTNCs to access services, address concerns as they arise and
reduce the risk of emergency admissions to hospital or residential care. This
will require strong partnerships and effective communication systems
between social services, community-based health teams and voluntary/third
sector organisations, as described above, to achieve this.
There is now a body of evidence from this research initiative (Abbott and
Carpenter, 2009; Cook and Atkin, 2011; Jackson, 2011a and b;) and
elsewhere, (SCIE, 2009) that personalised services for people with LTNCs
and their carers should offer the kind of support that facilitates choice, such as
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A Life More Ordinary – Improving Outcomes
community-focussed brokerage 5. Direct Payments and individual budgets
are a means for some people to self-manage but better support and
information about alternative options (e.g. to provide support with employing
care workers) often needs to be more readily available.
Timely provision of equipment and home adaptations are also shown to be
major contributors to independence in daily life and carer assistance.
Information, advice and support to use personalised budgets to
purchase or rent equipment (as well as purchase care services) are other
areas for development. There is scope for user-led organisations that
support independent living to offer such brokerage, advocacy, peer support,
information and advice services. This will require them to have partnerships
with local authorities as set out in the Building Stronger Communities strategy
and described in “Practical Approaches to Improving the Lives of Disabled and
Older People through Building Stronger Communities” (DH, 2010).
Carers require a range of flexible options for high quality replacement
and respite care and ready access to services in an emergency. Wider
recognition of carers’ roles and responsibilities within health and social care,
as set out in the Government’s inter-departmental policy document
‘Recognised, valued and supported: next steps for the Carer’s Strategy (DH,
2010) will help to identify need and demand and also inform development of
the care market. Education and training programmes for care staff will be a
vital part of future service development strategies.
5
The concept of community-focussed brokerage is promoted by In-control, a national
charity, to encourage development of an infrastructure to provide support for self-directed
support as widely as possible. Accessed 22.12.2011 http://www.incontrol.org.uk/support/support-for-organisations/support-brokerage.aspx
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A Life More Ordinary – Improving Outcomes
Outcome 3: To have increased opportunities to participate in, and
contribute to, society on equal terms – improved social and economic
inclusion.
People with LTNCs require ongoing access to resource, community or leisure
centres, or other day opportunities, that offer culturally sensitive peer support
and social contact, personal development, gainful occupation, leisure
pursuits and help with finding employment. These services could also
usefully offer help with care co-ordination, information and advice about what’s
available from other community facilities and support and options for respite
and replacement care. As we have discussed, the potential for voluntary or
user-led third sector organisations to provide these types of services already
exists but they cannot develop and flourish without a commitment to strong
partnerships and support from public sector bodies. They have an
important role to play in raising awareness and promoting social inclusion so
that other community facilities become more accessible and usable by people
with LTNCs.
Innovation and leadership are needed to improve access to vocational
rehabilitation or other employment support services that enable people
with LTNCs to learn new skills or manage their condition so that they can
achieve their aspirations for work or meaningful occupation. This will also
contribute to wider integration and social inclusion of all those involved.
4.2.2. The TEAR model for future services
It is clear that there is still work to be done on building better communications
and stronger inter-connections between neurological and other health and
care services and local organisations if we are to ensure that expertise is
available in different settings from the point of diagnosis onwards. But there is
another more fundamental aspect that also requires urgent attention. This is
the cultural shift needed to create services where professionals and service
users have the time and space to build relationships and engage in the kind of
open dialogue that will deliver effective health and care interventions and
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A Life More Ordinary – Improving Outcomes
support people to manage their own care where they can. Cook and Atkin’s
case study indicates that it takes time, energy and commitment from all
concerned, but the investment is necessary to achieve effective and costeffective outcomes for people with LTNCs. The “nothing about us without us”
approach taken by Cook and Atkin in their participatory research
methodology, which is echoed in current policy and espoused by Advisory
Group members in the Foreword to this report, is key to addressing this.
The TEAR approach presented in Figure 1 has been devised to bring together
the findings from this research initiative in diagrammatic form as an aid to
planning and delivering effective services. The starting point for the TEAR
approach is the person whose life is affected by a LTNC. The model
encapsulates core requirements for different service components and aspects
of delivery that combine to improve outcomes for people with LTNCs and their
carers.
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A Life More Ordinary – Improving Outcomes
50
A Life More Ordinary – Conclusions
5. CONCLUSIONS
This overview report has summarised the evidence from the LTNC RI in order
to consider what progress has been made in respect of meeting the objectives
of the NSF for LTNCs. It draws on ten very different, but complementary,
studies to give us a comprehensive snapshot in time. The picture it presents is
one of variable and patchy service provision, which is characterised by lack of
continuity between services and which, on balance, does not serve people
with neurological conditions consistently well.
The research shows that the expertise available from specialist health
services is highly valued by those that have access to them, but there are still
parts of the country where this is limited, or only addresses certain
neurological conditions. The inter-connectivity between these specialist health
services and others in social care and community settings needs to be
improved. We need to share professional and personal expertise more widely
to increase opportunities for support and practical help.
There is a negative impact on carers’ health and well-being when they have
no choice in taking on a care coordinating role, particularly at critical
transitional stages, such as at the point of reaching adulthood, or at the end of
life. The costs of this happening are demonstrable and unacceptably high in
terms of their own, and their cared for person’s, health and well-being and for
society as a whole.
The right equipment and adaptations have been shown to play an important
part in supporting caring tasks, helping people to self-manage, to be
independent and to prevent injury. There is a lot to be gained from making
better use of emerging technologies and for independent living equipment to
be more readily available to all requiring it.
It is also clear that people with a LTNC are doubly disadvantaged by poor
communication, information and demand management systems that make it
difficult for them to access services as and when they require them. Feeling
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A Life More Ordinary – Conclusions
that they have to fight to get the right support adds unnecessary stress and
has been shown to have a negative effect on mental health, with all the
treatment costs that entails. As the research demonstrates there are cost
savings to be made in re-designing services to deliver improved outcomes.
Social and economic inclusion and autonomy will be greatly enhanced by
improving health and social care, but only in the context of a more accessible,
open society in which the life experiences and contributions of people with
neurological impairments are recognised and valued. This requires ongoing
public education and awareness-raising programmes to change attitudes and
behaviours.
There are both opportunities and challenges in addressing many of the issues
raised by the research in the current climate of economic austerity.
Opportunities exist in the Government’s plans to reform health, social care
and public services so that they offer high quality, person-centred responses
(DH, 2010). The re-designing of health and social support services that
embrace the requirements of people with LTNCs will lead to those services
being more accessible and effective for everyone.
The challenges include the gaps that remain in the evidence for the economic
benefits of some of the interventions and approaches recommended in this
research. We need to know more about aspects of being diagnosed, what
types of day care and community support are affordable and work well in the
long-term and what people with LTNCs require from self-management
programmes that is different from what they get from other generic expert
patient programmes. Little is still known about what needs to be done to
develop a diverse care market so that there is real choice for people to use
personalised budgets.
It is clear from the evidence considered here that people with LTNCs and their
carers do not have unrealistically high aspirations or expectations for care and
support – they just want to get their lives back. The evidence from this
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A Life More Ordinary – Conclusions
initiative has helped us to recognise the degree to which people can be
marginalised by the very health and care systems created to support them.
This is not to deny the hard work, expertise and commitment of people who
work in health and social care, who also recognise and can be frustrated by
the organisational limitations on them.
The term ‘long-term conditions’ (LTCs) has become short-hand in policy
documents, among health professionals and policy makers for the more
common medical conditions, such as diabetes, back pain or chronic heart
disease. These conditions are now becoming better understood by the
general public and recent initiatives have led to improved continuity and the
development of self-help and healthy lifestyle programmes (Ipsos Mori, 2011).
The same needs to happen for neurological conditions. At present they are
not routinely part of our lexicon of care and support systems. This implies that
leadership on neurological conditions needs encouragement and facilitation at
local and regional levels to ensure they are given appropriate priority and
allocation of resources.
Advisory Group members affected by neurological conditions have been part
of this initiative from the beginning. Their experience has helped to shape the
questions that were asked and they have questioned the findings as they
emerged. They have played an essential role in keeping us focussed on the
outcomes they need. This is the clearest message from this research initiative.
It is only when the interests of people who use services are at the very heart
of their development that we will start to deliver the effective, efficient and high
quality services they have every right to expect.
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A Life More Ordinary – Conclusions
5.1 Summary Checklists
Summary checklist for planners and commissioners
What’s required:
•
Up to date data about the extent of people living with LTNCs in your local
population and their service needs;

The Neurology 2010 Compendium (Barr, 2010) is a very useful
resource to facilitate commissioning LTNC services and includes
The Needs and Complexity Rating Scale for LTNCs (Turner-Stokes,
2008) - an invaluable tool;
•
Inclusion of LTNCs in your Joint Strategic Needs Assessments;
•
Joint or integrated commissioning arrangements including those for joint
accountability or pooled budgets;
•
Consultation processes that bring a wide range of stakeholders together to
inform your planning activities;
•
Cross-sector planning and implementation groups in which service users
and carers can be actively involved;
•
The establishment and ongoing support of community inter-disciplinary
neurological rehabilitation teams (CINRTs);
•
Service specifications for CINRTs that ensure that specialist knowledge
and expertise are available across a range of neurological conditions;
•
The development of widespread preventative services that support people
to self-manage and access support as required;
•
Efficient and responsive wheelchair and equipment services;
•
Information, advice, community-focussed brokerage and support to take up
Direct Payments and personal budgets;
•
The establishment of multi-agency neurological vocational rehabilitation
services;
•
Improved access to high quality replacement and respite care services;
•
A single point of contact for each individual with a LTNC;
•
Facilitation of open pathways and links which enable generic health and
social care and voluntary sector providers to share expertise;
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A Life More Ordinary – Conclusions
•
More widely accessible services for all LTNCs, i.e. ensuring admission
criteria do not exclude people on the basis of diagnosis alone;
•
Well-defined processes for activities such as review, goal setting & care
planning with time for inclusive practice as defined by Cook et al (2011).
Key questions:
•
Appropriate and accessible information and advice - how will you ensure
that people are kept informed in ways that are right for them?
•
How do you know what local providers and organisations there are locally
with the expertise and experience to contribute – e.g. who’s best placed to
run self-management, education and peer support and day opportunities?
•
What role can you play in shaping the care market and encouraging it to
develop – what is necessary to ensure the market offers people real choice
and quality?
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A Life More Ordinary – Conclusions
Summary checklist for providers and practitioners
What’s required:
•
Regularly collected comprehensive data about how people with LTNCs
experience your services;
•
Knowledge of how your service fits in with and complements others for
people with LTNCs;
•
A commitment to inclusive practice and to enabling its adoption at all
levels, including recognition of the role and value of communicative space;
•
Expertise and competence that is relevant to different roles and
responsibilities and the training and ‘on the job’ support to acquire it;
•
Active engagement in local networks of other care providers and user
organisations;
•
An organisational culture of ‘can do’ and commitment to the facilitation of
support and care.
Key questions:
•
How can you work with other organisations to identify a shared goal of
supporting people with LTNCs and develop shared objectives to deliver it?
•
How will you ensure that your expertise and skills are developed,
maintained and actively shared for the benefit of people with LTNCs?
•
How do you demonstrate that your service is effective and gives good
value for money?
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A Life More Ordinary – Conclusions
Summary checklist for educators and workforce planners
What’s required:
•
The development of learning opportunities to equip the workforce of the
future to fulfil new roles such as key worker and care coordinator;
•
Undergraduate curricula that cover LTNCs and their management that is
underpinned by the social model of disability, so that health practitioners
are better equipped to work as part of integrated health & social care
teams with a shared culture, language etc.;
•
Understanding of what is meant by inclusive practice and how it is
achieved;
•
Widespread education of the generic workforce to a basic level of
knowledge about LTNCs through specific modules, e.g. in the
apprenticeship Quality Certificate Framework. There needs to be better
acknowledgement of the value of on the job learning due to the unique
needs of individuals with LTNCs. This can only be gained through allowing
the expert patient, the carer and the CINRT that supports them to share
their expertise with the broader team;
•
Clinical leadership training to facilitate innovations from within the service
(may be more relevant at post-graduate level of education).
Key questions:
•
How can you incorporate inclusive practice, and the communication and
interpersonal skills to deliver this, into your learning programmes?
•
How can you embed in professional practice the knowledge & skills
required to undertake important aspects of LTNC management such as
goal setting, vocational rehabilitation, effective information provision, care
planning, end of life care planning?
•
What role can you play in developing learning opportunities for those
working in social care so that they gain a better understanding of LTNCs,
to ensure that care planning meets all service users’ and carers’
requirements?
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A Life More Ordinary – Conclusions
Summary checklist for voluntary and third sector organisations
What’s required:
•
Wide recognition of the four distinctly different, but complementary, roles
for voluntary and third sector organisations in supporting people affected
by LTNCs through provision of: a) peer support and advocacy-related
services and b) health and care coordination and support. Namely;
i.
User-led services that offer peer support, advocacy, social contact,
information and advice, community-focussed brokerage and support
for independent living for people with LTNCs;
ii.
Facilitation and support for people with LTNCs and their carers to
participate in planning and developing public services;
iii.
Partnership working with health and other public services, to ensure
that specialist nurses and key/support workers employed by
voluntary organisations can coordinate care effectively;
iv.
Education and awareness programmes for professionals and the
general public.
Key questions:
•
How can you develop sustainable income streams so that you can retain
your independent role and voice on behalf of service user?
•
How can you develop shared objectives and sustainable partnerships with
public sector bodies and other stakeholders?
•
What roles can you play in sharing knowledge with those working in health
and social care and other sectors (employment, housing etc) so that they
gain a better understanding of LTNCs, to ensure that their services meet
all service users’ and carers’ requirements?
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A Life More Ordinary – Glossary
6. GLOSSARY
Terms used in this report
Brokerage
Brokerage, or help with using personalized budgets to plan
support for independent living, is not yet widely recognized or
developed in the UK. SCIE suggests that it needs to be
independent of the service system. In-Control recommends a
‘community-focussed’ brokerage service that would be flexible to
support different people’s needs.
Implementation of individual budgets schemes in adults social
care SCIE Research Briefing 20, 2009. See: In Control
http://www.in-control.org.uk/support/support-fororganisations/support-brokerage.aspx
Carer
A carer is someone who, without payment, provides help and
support to a partner, child, relative, friend or neighbour, who could
not manage without their help. The term carer should not be
confused with a care worker, or care assistant, who receives
payment for looking after someone.
Definition from The Princess Royal Trust for Carers, cited in
Bernard et al 2011b.
Communicative
space
This is an overt space where people can ‘forge common
understandings’ and which is afforded value both within
organisations and by practitioners and service users. It is where
people come together to co-labour in order to shape treatment and
care, based on sharing and exploring each other’s ideas and
experiences. It is required to enable a process of active
engagement where all parties share responsibility for critical
reflection, which is essential for inclusive practice. This is crucial if
aspects of rehabilitation such as goal setting, care planning (e.g.
for personal support, end of life) are to deliver optimal outcomes
for, and be valued by, the individual with a LTNC.
Cook and Atkin, 2011, p 10.
Continuity of
care
A term describing the experience, and provision of, timely,
appropriate and ongoing care from relevant service providers as
required by people living with long-term health conditions. Parker
et al report there are currently no universally recognised
definitions of continuity of care.
Parker et al, 2010, p11
http://php.york.ac.uk/inst/spru/research/summs/ltnc.php
59
A Life More Ordinary – Glossary
Facilitator
An independent person who enables people to work more
effectively together through advocating fair, open and inclusive
communication. They assist people in thinking deeply about their
assumptions, beliefs and values and actions and to learn together.
Cook and Atkin, 2011, p10.
Hidden
impairments
This term was used by researchers to describe impairments that
are not immediately apparent, such as behavioural, emotional and
mental health difficulties.
Jackson, 2011 a; Playford, 2011.
Inclusion
This term is used to conceptualise a process that involves society
in making changes, both physical and attitudinal, that embrace
diversity and enable all people to make choices about the way
they live their lives. Inclusive practice incorporates this as a
fundamental aspect of practitioner or provider behaviour.
Cook and Atkin, 2011, p11.
Integration
Arguably, integration is the provision of ‘reasonable adjustments'
to enable facilities to admit people with particular needs but where
the setting itself remains essentially unchanged. It is characterised
by an approach where disabled people may have certain choices
but have to fit in, in the best way they can, with the onus being on
the person to make accommodations.
Cook and Atkin, 2011, p11.
Rehabilitation
Rehabilitation is a process of assessment, treatment and
management by which the individual (and their family/carers) are
supported to achieve their maximum potential for physical,
cognitive, social and psychological function, participation in society
and quality of life. Individual goals for rehabilitation vary according
to the trajectory and stage of their condition and the individual
concerned.
British Society of Rehabilitation Medicine:
http://www.bsrm.co.uk/ClinicalGuidance/Levels_of_specialisation_
in_rehabilitation_services5.pdf
Replacement
care
Defined by Bernard et al (2011b) as services that would be used
to enable carers to go to work, or continue working or engage in
training or education.
Bernard et al, 2011b, p 5.
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A Life More Ordinary – Glossary
Respite care
Defined by Bernard et al (2011b) to describe services that would
allow carers to take breaks from caring for rest, relaxation, leisure
or social activities.
Bernard et al, 2011b, p 5.
Telecare
Any service that brings health and social care directly to a user,
generally in their homes, supported by information and
communication technology. It covers social alarms, lifestyle
monitoring and Telehealth.
http://www.telecare.org.uk/information/47490/what_is_telecare/
Vocational
rehabilitation
A specialist rehabilitation service (for people with long-term
neurological conditions) characterised by a multi-disciplinary team
with expertise in long- term neurological conditions who, through
shared education and learning and by working with employees
and employers in the work-place, aim to meet the needs of the
majority of their patients/clients to achieve their goals in
meaningful occupation.
Playford, 2011, p12.
Initialism/
acronym
CINRT
Meaning
CMT
Charcot-Marie Tooth disease
CQUIN
Commissioning for Quality and Innovation
DH
Department of Health
DMD
Duchenne Muscular Dystrophy
HD
Huntington’s Disease
JSNA
Joint Strategic Needs Assessment
LIFE
Long-term Fitness Enablement (study)
LTC
Long-term Condition (usually a medical condition)
LTNC
Long-term Neurological Condition
LTNC RI
Long-term Neurological Conditions Research Initiative
MS
Multiple Sclerosis
MSA
Multiple System Atrophy
NSF
National Service Framework
ODI
Office for Disability Issues
Community Inter-disciplinary Neurological Rehabilitation Team
61
A Life More Ordinary – Glossary
ONS
Office for National Statistics
OT
Occupational Therapist
PCT
Primary Care Trust
PD
Parkinson’s Disease
PRP
Policy Research Programme
PSP
Progressive Supra-nuclear Palsy
QR
Quality Requirement
RESULT
Review of Epidemiology and Service Use in Rare LTNCs (study)
SSIPC
Specialist Short-term Integrated Palliative Care
THIN
The Health Information Network
TSO
The Stationery Office
VR
Vocational Rehabilitation
62
A Life More Ordinary – References
7. REFERENCES
Abbott, D. and Abbott and Carpenter, J. (2009) Transition to Adulthood for Young
Men with Duchenne Muscular Dystrophy and their Families. University of
Bristol
Barr, L. (2010) The Neurology 2010 Collection. The LTC Implementation Team
http://www.ltc-community.org.uk/articles.asp?action=view&id=5894
Bernard, S., Aspinal, F., Gridley, K. and Parker, G. (2010) Integrated Services for
People with Long-term Neurological Conditions: Evaluation of the Impact of
the National Service Framework. London: HMSO
Black, C. (2008) Working for a Healthier Tomorrow. London: Crown Copyright
British Society for Rehabilitation Medicine (2010) Vocational Assessment and
Rehabilitation – Guidelines for Best Practice. London: BSRM
Cook and Atkin, T. (2011) Towards Inclusive Living: A Case Study of the Impact of
Inclusive Practice in Neuro-Rehabilitation/Neuro- Psychiatry Services.
Northumbria University
Dawes, H. (2010) The Long-term Fitness Enablement (LIFE) Study. Oxford Brookes
University
Department of Health (2007) The National Service Framework for Long-term Care.
London: Crown Copyright
Department of Health (2007) Putting People First: a shared vision and commitment
to the transformation of Adult Social Care. London: Crown Copyright
Department of Health (2005) Health, Work and Well-being - Caring for our Future. A
Strategy for the Health and Well-being of Working Age People. London:
Crown Copyright
Department of Health (2010) Equity & Excellence: Liberating the NHS. Cm 7881.
London: Crown Copyright
Department of Health (2010) A Vision for Adult Social Services: Capable
Communities and Active Citizens. London: Crown Copyright
Department of Health (2010) Our Health and Well-being Today. London: Crown
Copyright
Department of Health (2010) Healthy Lives, Healthy People: Transparency in
Outcome. Proposals for a Public Health Outcomes Framework. Cm 7985.
London: Crown Copyright
63
A Life More Ordinary – References
Department of Health (2010) Practical Approaches to Improving the Lives of
Disabled and Older People through Building Stronger Communities. London:
Crown Copyright
Department of Health (2010) Recognised, valued and supported. The next steps for
the Carers’ Strategy. The Stationery Office. Crown Copyright
Department of Health (2010) The Essence of Care. Benchmarks for the Fundamental
Aspects of Care. The Stationery Office. Crown Copyright
Department of Health (2010) How to Use the Essence of Care. The Stationery Office.
Crown Copyright
Department of Health (2010) Recognised, Valued and Supported: next Steps for the
Carers Strategy.
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/do
cuments/digitalasset/dh_122393.pdf
Fitzpatrick R., Peters, M., Doll, H., Harris, R., Jenkinson, C., Playford, D. and
Ziebland, S. (2010) The Needs and Experiences of Services by Individuals
with Long-term Progressive Neurological Conditions and their Carers. A
Benchmarking Study. University of Oxford
Freeman, G., Woloshynowych, M., Baker, R., Boulton, M., Guthrie, B., Car, J. et al
(2007) Continuity of Care 2006: What have we learned since 2000 and what
are policy imperatives now?. London: NCCSDO
Hoppitt, T., Calvert, M., Pall, H., Gill, P., Yao, L., Freemantle, N., Sackley, C. (2011)
Review of Epidemiology and Service Use in Rare Long-Term Neurological
Conditions. University of Birmingham
Ipsos Mori, (2011) Long Term Health Conditions 2011. A research study conducted
for The Department of Health. London: Ipsos Mori
Jackson, D., Turner-Stokes, L.., Harris, J., McCrone, P., Easton, A. and Leigh, N.
(2011a) Support for Carers, Particularly those with Multiple Caring Roles: An
Investigation of Support Needs and the Costs of Provision. Final Report to the
Department of Health. Kings College, London
Jackson, D., Williams, D., Turner-Stokes, L., Saleem, T., Higginson, I., Harris, J.,
McCrone, P (20011b). How do carers of people with long-term neurological
conditions experience the provision of replacement care? Kings College
London
Leigh, N., Higginson,I., Saleem,T., Wei.G., Koeser.L., McCrone.P., ( 2011) Defining
the palliative care needs of people with late-stage Parkinson's Disease,
Multiple System Atrophy and Progressive Supranuclear Palsy, Kings College,
London
64
A Life More Ordinary – References
NHS End of Life Care Programme (2011) End of life care in neurological conditions –
a framework for implementation. www.endoflifecareforadults.nhs.uk accessed
December 2011
Neurological Alliance (2nd ed. 2006) Getting the Best from Neurological Services. A
guide for people affected by conditions of the brain, spine or nervous system,
2006, London. Neurological Alliance
Office of National Surveys (2010) Life Opportunities Survey: Interim Results 2009/10.
Office of Public Sector Information: Crown Copyright
Playford, E.D., Radford, K., Burton, C., Gibson, A., Jellie, B., Sweetland, J., Watkins,
C. (2011) Mapping Vocational Rehabilitation Services for People with LongTerm Neurological Conditions. Summary Report. University College London
Sayce, L. (2011) Disability employment support fit for the future; a review of
employment support for disabled people. DWP: Crown Copyright
SCIE (2009) Implementation of Individual Budget Schemes in Adult Social Care.
SCIE London
Turner-Stokes, L. (2008) The Needs and Complexity Rating Scale (NCRS) for LTNC.
Kings College, London
65
A Life More Ordinary – Evidence of progress
APPENDIX ONE: EVIDENCE OF PROGRESS IN MEETING NSF
QUALITY REQUIREMENTS
The extent of evidence for each Quality Requirement (QR) is summarised by a
colour code system, where:
red = little or no evidence of the QR being met anywhere;
red + amber = some evidence that QR is being met, or nearly met in some places;
amber + green = some evidence that QR is generally being met, or nearly met;
green = strong evidence that the QR is generally being met.
Each colour code has been designated by reviewing evidence that relates to each
statement across the studies. A summary table of all the QRs is presented at the
beginning of this section, followed by detailed information about the evidence
behind the colour code used for each QR in turn.
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A Life More Ordinary – Evidence of progress
Table 1. Summary of progress against all Quality Requirements
Quality Requirement 1: A person-centred service.
Joint commissioning arrangements in place
Service systems that provide integrated care
Care planning and co-ordination routinely experienced
Information about treatment and support to self- manage
In contact with a health professional
Quality requirement 2: Early recognition, prompt diagnosis and treatment.
Prompt referral to specialist (within 18 weeks)
Prompt diagnosis (within 36 weeks)
Quality requirement 3: Emergency and acute management.
Arrangements in place to ensure prompt identification and treatment for people
with a LTNC on admission to hospital
Quality requirement 4: Early specialist rehabilitation.
In-patient rehabilitation services established with links to ongoing support
Evidence of inter-disciplinary team working & communications across the board
Quality requirement 5: Community rehabilitation and support.
Easy access to ongoing community rehabilitation, advice and support
Service responsive to changing, ongoing needs
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A Life More Ordinary – Evidence of progress
Quality requirement 6: Vocational rehabilitation.
Easy and equitable access to vocational rehabilitation
Service responsive to changing, ongoing needs
Quality requirement 7: Providing equipment and accommodation.
Timely and appropriate equipment and adaptations
Equitable services that are responsive to changing, ongoing needs
Quality requirement 8: Providing personal care and support.
Integrated health and social care support designed to offer choice about living
independently at home
Information and advice about options for personal care and support
Quality requirement 9: Palliative Care.
Easy access to comprehensive palliative care services
Support for carers of adults with end-stage neurological conditions
Quality requirement 10: Supporting family and carers.
Carers’ assessment of needs
Care plans for carers implemented
Quality requirement 11: Caring for people with LTNCs in hospital or other
health and social care settings.
Neurological needs met when receiving care for other reasons
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A Life More Ordinary – Evidence of progress
Quality Requirement 1: A person-centred service
People with LTNCs are offered integrated assessment and planning of their health
and social care needs. They are to have the information they need to make informed
decisions about their care and treatment and, where appropriate, to support them to
manage their condition themselves.
Joint commissioning arrangements in place
Service systems that provide integrated care
Care planning and co-ordination routinely experienced
Information about treatment and support to self manage
In contact with a health professional
Indicators of progress
In Bernard et al’s national survey of PCTs (2010) 44% of respondents reported that
they had completed Joint Strategic Needs Assessments (JSNA) that included a
reference to LTNCs in general, with 10% referring to one or more LTNC specifically
(2% of PCTs answered ‘yes’ to both).
Bernard et al (2010) report that almost three quarters of PCTs responding to the
survey had joint commissioning arrangements for LTNCs in place:
• 12% of PCTs reported commissioning arrangements for LTNCs via a single
health and social care organisation, or joint or integrated commissioning team
accountable to both bodies and using pooled budgets;
• 62% had less formal arrangements where individual stakeholders remained
accountable to their own organisation, but some joint commissioning
arrangements existed, including aligned budgets.
Bernard et al (2010) found that 66% of PCTs had arrangements in place to
implement the NSF for LTNCs, e.g. across-sector, strategic group with responsibility
for service improvement for LTNCs, with just over two-thirds of these groups (68%)
involving service users and/or carers. Most groups appeared to be active, 88%
having met in the previous three months before the survey.
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A Life More Ordinary – Evidence of progress
Bernard et al (2010), Abbott and Carpenter (2009), Jackson (2011a and 2011b) all
present evidence of health and social care systems that provide integrated care and
identify particular models of care that could successfully provide a person-centred
service and were highly valued by service users, such as:
• Nurse specialists and/or key workers
• Community Interdisciplinary Neurological Rehabilitation Teams (CINRTs)
• Day services
However, provision was patchy across the country and varied according to LTNC:
• 73% of PCTs in Bernard et al’s survey (2010) reported having one or more
CINRT, with 47% of them covering all LTNCs
• 93% of PCTs in Bernard et al’s survey reported provision of nurse specialists
in their area, but only 20% covered all LTNCs
• Newcastle Muscle Centre cited as the only service offering fully integrated
multi-disciplinary service and continuity of care for people with DMD (Abbott
and Carpenter, 2009).
Fitzpatrick et al (2010) found that most patients (95%) were in contact with a health
professional, and few reported problems with being able to consult when necessary.
94% felt that they were given enough information about how and when to take their
medication.
In Jackson’s study (2011a) almost all of the people in the sample (95%) had been in
contact with a health professional about their neurological condition in the year
before the survey & felt informed about medication (94%).
Inhibitors of progress
Evidence from Bernard et al’s survey (2010) reveals 47% of PCTs systematically
recorded numbers of people with LTNCs and, of that group, only a third recorded all
LTNCs. Epilepsy was the single most likely condition to be recorded (28%).
Bernard et al (2010) found that 89% of PCT Commissioners did not know how many
people with LTNCs had care plans, as set out in DH guidance. Fitzpatrick et al
(2010) found only 22% of his sample had a care plan, though the majority of them
(75%) felt it was being kept up to date.
Fitzpatrick et al (2010), Jackson (2011a) and Abbott and Carpenter (2009) all found
that experiences were mixed regarding co-ordination of care, with only around a
third of participants reporting they had a professional care co-ordinator.
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A Life More Ordinary – Evidence of progress
Abbott and Carpenter (2009), Bernard et al (2010) and Hoppitt et al (2011) highlight
the extent of need for appropriate and timely information, particularly for people
with rarer neurological conditions and at transition between children and adults
services. Dawes (2020) also identified lack of information about safe, effective
exercise and concerns that both fitness and health practitioners lacked specific
knowledge about their neurological condition.
Fitzpatrick et al (2010) report that only 27% of survey respondents felt they had been
given enough support by health and social care professional to develop selfmanagement strategies.
In Jackson’s 2011b study, nine in every ten of the 142 adults with LTNCs were rated
by their carers as having complex needs. However, only a third had a case manager
or equivalent person who was responsible for the planning and co-ordination of their
health and/or social services. A similar number had participated in a review meeting
to address co-ordination of services during the past year. The remaining two thirds
do not appear to have received integrated assessment and planning of their health
and social care needs.
Three quarters (209/284, 74%) of the carers in Jackson’s study (2011a) expressed a
need for more advice, information and help about the neurological condition of their
cared-for person.
Jackson (2011a) also reported carers’ uncertainty about who had a ‘care coordinating’ role and that social services seemed to be “fragmented and inefficient”
(p93). Over three quarters of the sample of 282 carers in this study needed help with
planning treatment and care for the adults they cared for, either currently or in
anticipation of future events.
Although sample sizes are relatively small in the RESULT study (Hoppitt et al, 2011),
and the data describe patients’ reports/ perceptions of the care they received, the
levels of information offered do not appear to meet the recommendations set out in
the NSF.
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A Life More Ordinary – Evidence of progress
Quality requirement 2: Early recognition, prompt diagnosis and treatment.
People suspected of having a neurological condition are to have prompt access to
specialist neurological expertise for an accurate diagnosis and treatment as close to
home as possible.
Prompt referral to specialist (within 13 weeks)
Prompt diagnosis (within 36 weeks)
Indicators of progress
In Fitzpatrick et al’s study (2010), 65% of respondents reported a period of a year or
less before they received a definite diagnosis and 35% reported a period of at least a
year. However for the majority of respondents the experiences surrounding
diagnosis related to more than five years prior to the survey. It is also noted that
there are difficulties in saying to what extent these waiting times were because of the
ways that symptoms may occur and GPs’ low levels of experience in dealing with
them (because of the typically small numbers of people with LTNCs per practice).
Inhibitors of progress
Hoppitt et al (2011) report that, across the board, it can take up to two years to
diagnose a rare neurological condition, but “mean levels vary across conditions and
standard deviations are large” (p138). Making a diagnosis can be a lengthy process,
as many rare LTNCs rely on the process of elimination (as illustrated by the fact that
the mean time to diagnosis in Huntington’s Disease was 6 months, where it can be
done via a genetic test, compared to 3 years in Multiple System Atrophy, where
symptoms can be initially mis-diagnosed as Parkinson’s Disease).
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Quality requirement 3: Emergency and acute management
People needing hospital admission for a neuro-surgical emergency are to be
assessed and treated in a timely manner by teams with appropriate neurological and
resuscitation skills and facilities.
Arrangements in place to ensure prompt identification and treatment for
people with a LTNC on admission to hospital
Indicators of progress
Bernard et al (2010) found some examples of formal links between emergency
departments and neurological specialists to ensure prompt identification and
treatment, including access to tertiary centres of specialist expertise.
In Hoppitt et al’s study (2011) there was some evidence from a very small sample
(N=8) that, in neurology wards, people with rarer LTNCs were generally satisfied with
the way staff addressed their condition-specific needs.
Inhibitors of progress
Jackson et al (2011a) report that the usual routes to emergency units via ambulance
were used, but where carers had medical or psycho-social concerns ‘out of hours’
they did not feel confident about using generic advice services, such as NHS Direct,
especially if the cared-for person had a rare neurological condition.
Bernard et al (2010) identified ill-defined pathways in some areas.
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A Life More Ordinary – Evidence of progress
Quality requirement 4: Early specialist rehabilitation
People with LTNCs, who would benefit from rehabilitation, are to receive timely,
ongoing, high quality rehabilitation services in hospital or other specialist setting to
meet their continuing and changing needs. When ready, they are to receive the help
they need to return home for ongoing community rehabilitation and support.
In-patient rehabilitation services established with links to ongoing support
Evidence of inter-disciplinary team working & communications across
the board
Indicators of progress
Bernard et al (2010) found evidence from case studies that some hospital-based
rehabilitation teams were working in an interdisciplinary way and that there were
some dedicated in-patient specialist rehabilitation units, including intermediate
rehabilitation units, providing a clear pathway into ongoing community rehabilitation
and support.
Hoppitt et al (2011) found that nearly all patients reported having received at least
one rehabilitative service during the previous 12-month period.
Inhibitors of progress
Bernard et al (2010) and Hoppitt et al (2011) both report lack of interdisciplinary
working, or poor care-co-ordination, in some hospital settings.
Bernard et al also cite poor communication and information transfer as a problem.
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A Life More Ordinary – Evidence of progress
Quality requirement 5: Community rehabilitation and support
People with LTNCs living at home are to have ongoing access to a comprehensive
range of rehabilitation, advice and support to meet their continuing and changing
needs, increase their independence and autonomy and help them to live as they
wish.
Easy access to ongoing community rehabilitation, advice and support
Service responsive to changing, ongoing needs
Indicators of progress
Bernard et al (2010) found that people in receipt of rehabilitation services from a
CINRT tended to have improved specialist support and continuity of care. Service
users particularly valued the support of CINRTs where it was ongoing, flexible in
place/time of delivery and holistic in approach. Ongoing support from nurse
specialists was also highly valued by service users.
Access to day opportunities that offered peer support and social and leisure
opportunities, as well as access to meaningful activity and/or learning and
employment opportunities, was an important element in community rehabilitation
and support.
Just over a quarter (81/282) of the adults with LTNCs in Jackson’s 2011a study, had
received community rehabilitation or day care (on average six times a month) in the
year before the survey. And half (145/282) had contact with out-patient therapy
services of one kind or another, though the extent to which their on-going needs
were being met is not known. A similar picture was found for the 142 adults with
LTNCs in Jackson’s 2011b study.
Hoppitt et al (2011) found a high proportion of people using rehabilitation services,
indicating that the majority of patients were aware of available services.
Abbott and Carpenter (2009) found evidence that, for young men with DMD, an
educational paradigm can be more enabling than one based on rehabilitation and
support. Support was evidently much more effective if it was provided in as natural a
way as possible, e.g. the university student whose paid carers were also students
with whom he went to parties if he wished).
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A Life More Ordinary – Evidence of progress
Inhibitors of progress
Bernard et al (2010) found that some people had problems in accessing ongoing
and flexible support due to:
• a lack of local availability or capacity of services
• restrictive eligibility criteria
• pathways that were ill-defined and unclear.
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A Life More Ordinary – Evidence of progress
Quality requirement 6: Vocational rehabilitation
People with LTNCs are to have access to appropriate vocational assessment,
rehabilitation and ongoing support to enable them to find, regain and remain in work
and access other occupational and education opportunities.
Easy and equitable access to vocational rehabilitation
Service responsive to changing, ongoing needs
Indicators of progress
Playford (2011) found pockets of excellence where developments often resulted from
the interests and vision of an individual worker and were evidence-based and
strategically recognised.
Most of the services identified were for people with sudden onset conditions, such as
traumatic brain injury and stroke, and provided support to help people return to an
existing job or find a new one.
Fitzpatrick et al (2010) and Bernard et al (2010) found that where these services
were available they were frequently condition-specific (e.g. head injury or stroke) and
often provided by voluntary organisations.
Inhibitors of progress
Both Playford (2011) and Bernard et al (2010) both found that vocational
rehabilitation services tended to be generic, rather than specific to people with
neurological conditions, although Playford also identified that 40% were conditionspecific. Carpenter (2009) found that rehabilitation models associated with conditions
like stroke or head injury did not meet the needs of young men with DMD.
In addition, Playford (2011) found evidence that training for staff delivering vocational
rehabilitation (VR) was inadequate. Not all of the people delivering this service
received regular training in VR. 30% of service providers had never received any
training.
While the majority of services stated that they offered long-term follow up, most of
the services identified had waiting lists of between 2 and 4 months, suggesting they
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A Life More Ordinary – Evidence of progress
were working to capacity and were unlikely to be able to respond in a crisis.
Bernard et al (2010) found that some areas had limited funding to provide/support
day opportunity services that might provide vocational rehabilitation.
In Abbott and Carpenter’s study less than a quarter (23%) of the sample of young
men with DMD had been in paid employment. Only a minority had received any
formal support from services to help them to stay in work, specifically receiving an
assessment of how their neurological condition affects work (20% of those who had
worked), and smaller proportions receiving support for work from an occupational
therapist, or receiving specific guidance about staying in work or restarting work.
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A Life More Ordinary – Evidence of progress
Quality requirement 7: Providing equipment and accommodation
People with LTNCs are to receive timely, appropriate assistive technology/equipment
and adaptations to accommodation to support them to live independently; help them
with their care; maintain their health and improve their quality of life.
Timely and appropriate equipment and adaptations
Equitable services that are responsive to changing, ongoing needs
Indicators of progress
80% of Abbott and Carpenter’s (2009) sample of families/young men with DMD either
did not need require equipment from health or social services or reported no
difficulties in obtaining it, and very few problems were reported in using equipment.
49% of the sample reported modifications to their current accommodation. Of this
group, 12% reported not receiving the financial support they needed from services for
modifications to accommodation.
Bernard et al (2010) report that, where there is CINRT or nurse specialist
involvement, they may successfully liaise with housing services to secure appropriate
accommodation and that these services may provide or facilitate access to specialist
equipment and liaise with services to expedite necessary adaptations.
In Fitzpatrick et al’s study (2010) about 80% of respondents reported no problems
with obtaining equipment. Hoppitt et al (2011) found that 71% in their study have had
some form of home adaptation, while over three-quarters had received aids and
equipment, although few received Assistive Technology (Telecare).
In Jackson‘s 2011a study, six out of 61 carers followed longitudinally for two years
had had their homes adapted during this time. Two adults cared for had Multiple
Sclerosis, two had Motor Neurone Disease, one Huntington’s Disease and one a
brain infection. In each case, prompt supply of appropriate equipment and
adaptations made a substantial difference to the quality of life of the adults cared for
and enabled carers to continue caring in the face of a deteriorating situation.
79
A Life More Ordinary – Evidence of progress
Inhibitors of progress
Bernard et al (2010) found evidence of poor availability of appropriate
accommodation, and waiting times for building adaptations and equipment
(particularly wheelchairs) were excessive in some areas.
Abbott and Carpenter (2009) report that wheelchair services have variable eligibility
criteria for provision, leading to a post-code lottery.
80
A Life More Ordinary – Evidence of progress
Quality requirement 8: Providing personal care and support
Health and social care services work together to provide care and support that
enables people with LTNCs to achieve maximum choice about living independently
at home.
Integrated health and social care support designed to offer choice about living
independently at home
Information and advice about options for personal care and support
Indicators of progress
Abbott and Carpenter (2009) and Jackson (2011) both report that, when Direct
Payments worked, they did seem to give greater choice about the timing and
flexibility of care, as well as who provides it.
Pooled data from Jackson’s 2001a and 2001b studies revealed that 23% of the 424
adults cared for and 7% of their carers received Direct Payments. The introduction
and use of these payments seems to have enabled a range of services to be
accessed, both for the adult cared for and carers. However, some were confused
about what the payments could be used for. Others experienced long bureaucratic
delays, or they were deterred by the complexity of paperwork and processes.
In Fitzpatrick et al’s survey respondents were asked about whether they had been
offered help from health and social services in two areas, housework and personal
care (dressing, washing, eating):
housework; over three quarters (79%) either did not feel they needed help or
received help from other sources. Of the remaining respondents, just over half (52%)
had not been offered help from services and would have liked it.
personal care; 76% of the sample either did not feel they needed help or received
help from other sources. Of the remaining respondents, 16% had not been offered
help and would have liked it.
81
A Life More Ordinary – Evidence of progress
Inhibitors of progress
Bernard et al (2010) found that where no CINRTs, nurse specialists or day services
were reported, there were no commonly available alternative models of care coordination for people with LTNCs across case study sites.
Bernard et al also report certain challenges to working together between
organisations and professions, including:
financial pressures that could make organisations more inward-looking
incompatible information systems and assessment processes
poor communication between staff
cultural barriers
staffing levels, turnover and capacity.
Hoppitt et al (2011) found that less than half of their combined sample (N=211)
reported having a social worker who co-ordinated their care, while the remainder
relied on informal carers.
82
A Life More Ordinary – Evidence of progress
Quality requirement 9: Palliative Care
People in late stages of LTNCs are to receive a comprehensive range of palliative
care services when they need them to control symptoms, offer pain relief and meet
their needs for personal, social, psychological and spiritual support, in line with the
principles of palliative care.
Easy access to comprehensive palliative care services
Support for carers of adults with end-stage neurological conditions
Indicators of progress
Abbott and Carpenter (2009) report use of children’s hospices for young men with
Duchenne Muscular Dystrophy.
Leigh (2011) reports that the King’s Centre for Palliative Care in Neurology has
developed a referral pathway that has been proposed for MS which could be
adapted for PD. This suggests a process of assessment, review and, if
appropriate, referral for specialist palliative care assessment and/or continuing
follow-up. This pathway includes appraisal of symptoms, disease progression,
communication and cognitive problems and complex treatment decisions.
Inhibitors of progress
Jackson (2011a) found little evidence of timely psychological support being made
available to carers of adults with end-stage progressive conditions; specifically
MND, MS and Huntington’s Disease. Access to palliative care services that could
offer counselling support both before and after bereavement was a key unmet
need in this group.
83
A Life More Ordinary – Evidence of progress
Quality requirement 10: Supporting family and carers
Carers of people with LTNCs are to have access to appropriate support and services
that recognise their needs both in their role as carer and in their own right.
Carers’ assessment of needs
Care plans for carers implemented
Indicators of progress
Pooling data across Jackson’s 2011a and 2011b studies revealed that 46% of the
total group of 424 carers had been offered a carer’s assessment at some stage. A
number reported confusion over eligibility and a reluctance on the part of social
services to assess adults cared for and carers separately. As a result, not all
carers had been identified by health and social care professionals as having
support needs in their own right.
Respite or replacement care was the commonest service offered to carers
following an assessment. The proportion of carers in Jackson’s 2011b study who
would want to use these services would rise from 51% to 91% if various barriers
could be surmounted. These included staff not being trained to manage adults with
complex problems, or lacking insight into their psycho-social needs.
A total of 45% of the carers would need these services so that they could work,
84% would want day care or home-based services so that they could take a short
break for rest/relaxation, with 59% wanting residential services so they could take
a longer break.
Inhibitors of progress
Fitzpatrick et al (2010) found that around a third felt they were not recognised (by
GPs) as carers and as many felt their experience as carers was not recognised
and valued.
•
Only 21% of carers had a carer’s assessment, and 23% who had not
received an assessment would like one.
84
A Life More Ordinary – Evidence of progress
Jackson (2011a) found that three-quarters of the carers responding to her survey
expressed a clear need for more help, advice and information about the
neurological condition, key health and social care professionals and available
support services. This finding was corroborated by Sackley (2011) and Fitzpatrick
et al (2010).
Jackson also identified carers’ confusion over eligibility and a reluctance, on the
part of service providers, to assess adults cared for and carers separately. She
found that carers of adults with ‘hidden’ (cognitive, mood, behaviour) problems and
those with multiple caring roles were less likely to be offered an assessment than
other carers. Opportunities for discussion about how best to plan personalised care
were lacking in this group.
85
A Life More Ordinary – Evidence of progress
Quality requirement 11: Caring for people with LTNCs in hospital or other
health and social care settings
People with LTNCs are to have their specific neurological needs met while receiving
care for other reasons in any health of social care setting.
Neurological needs met when receiving care for other reasons
Indicators of progress
In Hoppitt et al’s study (2011) just under 70% of patients across 58 in-patient visits
reported that hospital staff met the specific needs of their condition either ‘quite
well’ or ‘very well’. However, it is apparent that people with CMT reported their
needs were met less well (over 70% reported as ‘not at all’ or ‘a little’. Although this
is a very small sample of just seven hospital in-patient visits, these figures suggest
hospital staff on non-neurological wards may understand this condition less than
other rare ones).
Bernard et al (2010) reports that, where specialist practitioners were involved, they
took on the role of educating more generalist staff.
Inhibitors of progress
Fitzpatrick et al (2010) report that about 40% felt their needs were not met when in
hospital for their neurological condition.
86
A Life More Ordinary – Membership of the Advisory Group
APPENDIX TWO: MEMBERSHIP OF THE ADVISORY GROUP
Table 2. Advisory Group membership 2005-2011
Christine Barton MBE
Expert by experience
Marilyn Bentham (2009 - 2011)
ADASS
Professor Anne Chamberlain OBE
Emeritus Professor of
Rehabilitation Medicine
Expert by experience
Gillian Chedzoy
Jennifer Francis (2009- 2011)
(David Ellis, 2008-2010; Barrie Fiedler, 2005-2008)
SCIE
Chris Gunning (2010-2011)
(Bairbre Kelly, 2008- 2009, Andrew Nocon, DRC, 20052009)
DWP
Claire Guy, MSc (2009- 2011)
(Professor Cath Sackley, 2005 - 2009)
Rehabilitation Lead,
Physiotherapy
Conrad Hodgkinson
Expert by experience
John Holt
Expert by experience
Beverley Hopcutt
DH Clinical Adviser LTNC NSF
2004-20011
Speech &Language therapist
Julia Johnson
Ghazala Mir
Researcher, University of
Leeds
Occupational Therapist
Dr Maggie Murphy (2009- 2011)
(Dr Kate Radford, 2005 - 2009)
Sandra Paget
Expert by experience
Richard Parnell
Expert by experience
Bernd Sass (2009- 2011)
(Roy Webb, 2005 -2009)
NCIL
Kate Swinburn (2009-2011)
(Professor Sally Byng, 2005- 2008)
Connect (speech and
communication charity)
Professor Alan Thompson (2005 -2008)
Consultant Neurologist
Arlene Wilkie (2011)
(Claire Moonan, 2010 ; Lucy Brazg, 2007-2009;
Judith Kidd, 2005- 2007)
Patience Wilson (2005- 2007)
Neurological Alliance
87
The Department of Health
A Life More Ordinary – Policy Digest
APPENDIX THREE: POLICY DIGEST
Table 3. To show current policies and good practice guidance and their
relevance to people with LTNCs
Policy and Guidance: Relevance to LTNCs
Domain
Health
Status
Title
White
Paper
Equity and Excellence; liberating the NHS (DH, 2010)
Putting the patient first and ensuring that they are well
informed and have greater choice and control in decision
making are central. Main objectives are to improve health
outcomes and the quality standards that deliver them.
Policy
The NHS Outcomes Framework 2011/2012 (DH 2010)
Provides the mechanism for driving progress and monitoring
success in the NHS and includes long term conditions.
Guidance
Transition: moving on well, (DH and Dept for Schools, Children
and Families, 2008)
Underpins the NSF for children, young people and maternity
services –sets standards for transition from children to adult
services.
Guidance
The End of Life Care Strategy: Quality Markers and Measures
for end of life care (DH 2009)
To improve the quality of life for people with all diagnoses at the
end of life.
Guidance
Transforming Community Services. Demonstrating and
Measuring Improvement: Community Indicators for Quality
Improvement (DH, 2011) 6
Tool for local organisations to use to raise standards and
measure progress through their Joint Strategic Needs
Assessments (JSNA). It presents 43 quality indicators (QI)
across 7 domains: health and well-being, children and
families, acute care, rehabilitation, long term conditions,
end of life and ‘general’. The QIs are not mandatory but could
be used selectively in ‘bundles’ that meet local stakeholders’
priorities and objectives.
6
An interactive e-document, Source:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_1
26111.pdf .Accessed 29.10.2011
88
A Life More Ordinary – Policy Digest
Policy and Guidance: Relevance to LTNCs
Domain
Status
Title
Social Care
White
Paper
The Vision for Adult Social Care Services ( DH, 2010)
Sets out reforms based on 7 principles of “prevention,
personalisation, partnership, plurality, protection,
productivity and people” and establishes objectives to:
• break down barriers between health and social care
funding to incentivise preventative action;
• extend provision of personal budgets to give people
and their carers more control and purchasing
power;
•
Policy
extend the use of Direct Payments to carers and
encourage better community-based provision to
improve access to respite care.
Transparency in Outcomes: Adult Social Care Outcomes
Framework 2011/2012 (DH 2010)
This document notes the process of consultation to agree the
2011/12 Outcomes Framework;
• describes the principles for the way in which the
Outcomes Framework should be used and its
relationship with local outcome measurement;
• sets out the detail for each of the domains in the
Outcomes Framework, including the specific measures
agreed for 2011/12;
• provides details about the next steps for future
development of the outcomes-based approach and
improvements to the Outcomes Framework over coming
years.
Public
Health
White
Paper
Our Health and Well-being Today (DH, 2010)
New approach to public healthcare which sets out the evidence
behind the proposed Public Health Outcomes Framework.
Tackling inequalities in health is central to the 5 key domains for
public health:
1. health protection and resilience;
2. tackling the wider determinants of health;
3. health improvement;
4. prevention of ill-health;
5. healthy life expectancy and preventable mortality.
89
A Life More Ordinary – Policy Digest
Policy and Guidance: Relevance to LTNCs
Domain
Status
Title
Public
Health
Policy
Healthy Lives, Healthy People: Transparency in outcomes (DH,
2010)
Describes how public health, the NHS, social care and other
community services should connect, overlap and work together
in terms of shared outcomes. Recognition of shared interests
is seen as an important incentive to work and collaborate
together towards common goals.
Carers
Policy
Recognised, valued and supported. The next steps for the
Carers’ Strategy (DH, 2010)
Aims for carers to be respected as expert care partners who
can easily access the integrated and personalised services
required in their caring role. It prioritises 4 areas for attention:
1. Supporting people to identify themselves as carers at an
early stage, recognising the value of their contribution
and involving them from the outset (in designing local
care provision and in planning individual care packages);
2. Enabling people with caring responsibilities to fulfil their
educational and employment potential;
3. Personalised support both for carers and those they
support, to enable them to have a family and community
life;
4. Supporting carers to remain mentally and physically well.
(2010, p.6)
Guidance
The Essence of Care (TSO, 2010) and How to use The
Essence of Care (TSO, 2010)
In combination, they set out and facilitate development of
person-centred benchmarks for improving practice and
care which can be universally used to achieve better outcomes
for people using public care services.
Employment Review
Working for a healthier tomorrow (DWP, 2008)
Dame Carol Black’s review of our working-age population
makes the connections between health, work and well-being
and sets a number of initiatives in train to support people in
work.
90
A Life More Ordinary – Policy Digest
Policy and Guidance: Relevance to LTNCs
Domain
Status
Title
Employment Review
Disability employment support fit for the future; a review of
employment support for disabled people (Sayce, 2011)
It makes a case for improving personalised support to
enable disabled people to remain at or return to work.
Social
Report
inclusion,
citizenship
and
participation
Life Opportunities Survey Interim Report (ONS for ODI, 2010) 7
Provides contextual data and reveals a number of restrictions,
or social barriers, that have an impact on daily life for disabled
people. It shows that participating adults with impairments were
twice as likely as non-disabled adults to be limited in the type or
amount of paid work they did and that caring responsibilities
were a barrier to taking up voluntary work for 6% of them.8
Policy
Equalities Act, 2010
This Act aims to harmonise and strengthen existing antidiscrimination law to progress equality.
7
Accessed: http://www.esds.ac.uk/findingData/snDescription.asp?sn=6653 on 27/10/2011
56% of adults with impairments were limited in the type or amount of paid work they did
compared to 26% of non-disabled people. Source, as above.
8
91
A Life More Ordinary – Who’s involved in neurological services
APPENDIX FOUR: WHO’S INVOLVED IN NEUROLOGICAL SERVICES
Table 4. To show information needs of different stakeholders
Stakeholder
groups
Aspect
Strategic level
•
Organisational/
service level
•
•
Health professional
level
•
•
Service user and
carer level
•
•
•
Need to know what?
Other considerations
Planning and
commissioning
neurological services
Who provides what and
how to access it
Across sectors; health,
social care, housing,
education, employment,
voluntary
Sharing knowledge with
service users and carers
Sharing knowledge with
other health professionals
Knowing who to go to
Knowing what is available
Knowing entitlement to
provision
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
92
Epidemiological data
Service uptake and
usage
Effectiveness of services
Inter-agency agreements
Joint arrangements
Partnership agreements
Keeping professionals
informed
Keeping people with
LTNCs and carers
informed
Multi-disciplinary teams
Neuro-Networks
Record-keeping and
communications
Listening
Keeping up-to-date
Having access to
information sources
including the internet
Who to go to for up to
date information
Being kept informed
A Life More Ordinary – Who’s involved in neurological services
Table 5: To show who’s involved in the context of the NSF typology
Aspect
Diagnosing
LTNC and
managing
health
Support for
daily life and
facilitating
social and
economic
inclusion
Who’s involved?
Primary care
• GP
Secondary care
• Neurologist
Acute health:
• Neurologist
• Nurse specialist
• Neuro-physiotherapist
• Neuro-occupational therapist
• Speech and language therapist
• Dietitician
• Rehabilitation specialists
Community health:
• Nurse specialist/community matron
• Neuro-physiotherapist
• Neuro-occupational therapist
• Speech and language therapist
• Neuro-Psychologist
• Mental health worker
• Community neuro-rehabilitation
specialist
• Vocational neuro-rehabilitation specialist
Social care:
• Social worker/care manager
• Occupational therapist
Voluntary Sector :
• Welfare workers
• Advisers
• Nurse Specialists
• Independent living support workers
Housing Sector:
• Environmental health officer
• Occupational therapist
• Architect /designer
Employment Service:
• Specialist employment adviser
• Access to work officer
93
Sudden
onset
Fluctuating/
progressive
Stable,
/ongoing
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A Life More Ordinary – Continuity & outcomes
APPENDIX FIVE: CONTINUITY AND OUTCOMES
The following four tables show how different aspects of continuity described by
Bernard et al contribute to meeting the three broad outcomes described on page 44.
Long-term continuity – uninterrupted (health) care for as long as it’s
required:
• Features regular and co-ordinated review and follow-up as well as
an enabling approach to ad hoc access to services
Longitudinal continuity – involvement of as few professionals as possible
or necessary. Limited capacity could be mitigated by responsive,
sensitive, co-ordinated care and cohesive team working:
•
Initially, (at any given time of need) minimising the numbers of
(healthcare) professionals caring for the person with a LTNC as
required, perhaps with a key-worker who acts as a link between
the different people involved
• Also, as the condition fluctuates, people with LTNCs should
experience as few changes as possible in the professionals
caring for them
• Cross-sector, interdisciplinary teams (that communicate well
and recognise dis-continuities) can co-ordinate care
Relational, personal and therapeutic continuity:
• Where relationships can be built over time with key workers,
specialist nurses, GPs
• The trust and rapport that develops will underpin and facilitate
other types of continuity.
(Source: Bernard et al, 2010, p 74 -78)
94
Support for
daily life
Social
inclusion,
participation
Relationship continuity
Diagnose,
adjust to and
manage health
Table 6: To show how relationship continuity contributes to meeting outcomes
for people with LTNCs
Outcome
1
Outcome
2
Outcome
3









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
A Life More Ordinary – Continuity & outcomes
Diagnose,
adjust to and
manage
health
Support for
daily life
Social
inclusion,
participation
Table 7: To show how management continuity contributes to meeting
outcomes for people with LTNCs
Outcome
1
Outcome
2
Outcome
3
Flexible continuity – the degree to which elements of
service systems, e.g. appointments, reviews and
location that are flexible to suit an individual’s needs
Having responsive access to support for people
whose conditions fluctuate and relapse






Professionals having positive attitudes to being
flexible and accommodating service users
Offering different modes of contact, e.g. via
telephone or email






Cross-boundary continuity – this refers to continuity
across the boundaries that exist between services,
between professional groups and between service
users and their informal care networks



Management continuity – not just who is involved but how
organisations operate
•
•
•
•
•
(Source: Bernard et al, 2010, p 85-93)
95
A Life More Ordinary – Continuity & outcomes
Support for
daily life
Social
inclusion,
participation
Information continuity – excellent information transfer between
organisations, professionals, services and service users and carers
Diagnose,
adjust to and
manage health
Table 8: To show how information continuity contributes to meeting outcomes
for people with LTNCs
Outcome
1
Outcome
2
Outcome
3
•
A key pre-requisite for people with LTNCs to benefit from
information is that they are aware of and have access to it in the
first place. Information provision and signposting need to begin at
the point of diagnosis and continue, as people’s openness to (and
need for) information changes over time



•
Access to self-management programmes, support forums or other 
types of education can offer opportunities for peer support and
new avenues for information


•
Ongoing access to a key professional or specialist service able to
answer questions and allay concerns as and when they arise, is
one way of ensuring information continuity



•
Good links to the voluntary sector and local support groups



( Source: Bernard et al (2010), p94-99)
•
Continuity of personal agency refers to people retaining control
over their lives, managing their own health and making their own
choices. As such, it is a key element of independent living. It is
closely related to, but distinct from, continuity of social context
(Source: Bernard et al, 2010, p 99 -107)
96
Social
inclusion,
participati
on
Continuity of personal agency and social context – an addition to
Freeman’s 2007 model, to reflect current thinking and developments. It
might be perceived as an outcome in itself as a result of other kinds of
continuity.
• The concept of continuity of social context, where practitioners
understand the needs of people with LTNCs and help to promote
social continuity by providing appropriate equipment, practical
and emotional support, and information and advice
Diagnose,
adjust to
and
manage
health
Support
for daily
life
Table 9: To show how continuity of personal agency and social context
contributes to meeting outcomes for people with LTNCs
Outcome
1
Outcome
2
Outcome
3
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
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A Life More Ordinary – Useful resources
APPENDIX SIX: USEFUL RESOURCES
Since the publication of the NSF the pace of organisational change has appeared to
have sidelined service development for people with LTNCs. However, current
policies and reforms in the public sector are now completely in accord with the aims
of the NSF. In the interim, resources and data have been produced and are available
to help and facilitate development at local level.
In particular, The Neurology 2010 Collection published by the LTC Team and
available at http://www.ltc-community.org.uk/articles.asp?action=view&id=5894 is a
compendium of valuable resources and practical information and advice designed for
use by commissioners. It will be of interest to Clinical Commissioning Groups and
others wishing to demonstrate improvements in quality in line with Commissioning for
Quality and Innovation (CQUIN) requirements. It includes the Needs and Complexity
Data Scale (Turner-Stokes, 2008) which can be used to evaluate services in relation
to need.
Further resources and tools to support staff in delivering personalised care are
available at www.dh.gov.uk/longtermconditions. Transforming Community Services.
Demonstrating and Measuring Improvement: Community Indicators for Quality
Improvement (DH, 2011) is an interactive online tool designed to help organisations
to raise standards and measure progress through their Joint Strategic Needs
Assessments (JSNA). It presents 43 quality indicators (QI) across 7 domains: health
and well-being, children and families, acute care, rehabilitation, long-term
conditions, end of life and ‘general’. The QIs are not mandatory but could be used
selectively in ‘bundles’ that meet local stakeholders’ priorities and objectives. It is
available at:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalass
et/dh_126111.pdf
Neurological Commissioning Support is an initiative of the MND Association, MS
Society and Parkinson’s UK. The team works with PCTs and Local Authorities to
ensure that the needs of people living with LTNCs are at the heart of commissioning
and to deliver better outcomes for services in neurology. Further information can be
found at: http://www.csupport.org.uk/
Specialised Muscle Centres provide clinics for thousands of people with muscle
disease each year. The Newcastle Muscle Centre, referred to on pages 38 and 71, is
one of five such centres of excellence in the UK. For more information go to:
http://www.musculardystrophy.org/how_we_help_you/care_and_support/muscle_centres
97
A Life More Ordinary - Findings from the Long-Term Neurological
Conditions Research Initiative.
An independent Overview Report for the Department of Health
Written and produced by Maggie Winchcombe and the LTNC RI team
March 2012
This report can be read on-line or downloaded from www.ltnc.org.uk along with the
final reports from the ten studies in the LTNC RI.
For further information: maggie@ltnc.org.uk