The National End of Life Care Intelligence Network (NEoLCIN): report of the first year Using intelligence to improve end of life care 17 June 2011 - National End of Life Care Programme / National End of Life Care Intelligence Network (NEoLCIN) The NEoLCIN aims to improve the collection and analysis of data about end of life care services. It provides information to government, service providers, commissioners and researchers on adults approaching the end of life and on the quality, volume and costs of care provided to them. This document highlights what the network has achieved in its first year of operation.

1. The National End of Life Care
Intelligence Network (NEoLCIN):
report of the first year
Using intelligence to improve end of life care
Accessible and reliable data is more important than ever in an era of patient choice
and funding challenges.
The NEoLCIN aims to improve the collection and analysis of data about end of life
care services. It provides valuable information to government, service providers,
commissioners and researchers on adults approaching the end of life and on the
quality, volume and costs of care provided to them. Such intelligence will help drive
improvements in the quality and productivity of services.
This document highlights what the network has achieved in its first year of
operation.

2. INTRODUCTION
Professor Sir Mike Richards
(National Clinical
Director for Cancer
and End of Life Care)
Efforts to drive up the
quality and efficiency of
end of life care services have, in the past, been
hampered by the relative paucity of high quality
data. This is why we set up the NEoLCIN to
help drive forward implementation of the
national end of life care strategy.
A year on from its inception I am very pleased
to say that the network is firmly established and
has already provided new insights on end of life
care. Importantly, it is bringing together key
experts from a range of disciplines, all of whom
are committed to intelligence as a driver for
improving quality.
These experts are, in turn, bringing together
large datasets from health and social care
(as well as death certification) to enhance our
understanding of care delivered in the last
year of life.
but I am confident it will have an increasingly
important role in underpinning the
commissioning and provision of care in
the future.
OVERVIEW
Claire Henry
(Director of the
National End of Life
Care Programme)
The NEoLCIN has hit the
ground running.
In the twelve months to June 2011 it has
published nine reports, completed local end
of life care profiles and developed tools to aid
both commissioners and providers.
The end of life care profiles allow current
commissioners and the emerging GP consortia
to benchmark performance against
neighbouring or similar local health economies
(see page three). They draw on one of the
regional variations in how and where we die.
Some of the other tools fed into the review
of palliative care funding, due to report this
summer.
on co-­ordinated services, the network has
commissioned studies exploring how social care
can work with healthcare partners to improve
end of life care services and efficiency.
reports on dementia and variations in place
of death, has proved of wider interest being
covered by national television and newspapers
as well as the specialist press.
NEoLCIN will continue to provide the data
and analysis which will shape the National End
to improve end of life care. To ensure even
closer co-­ordination, management of the
network is now sited within the programme.
The network will also prove an increasingly
valuable resource to commissioners,
policymakers, providers and researchers.
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3. ACHIEVEMENTS
End of Life Care Profiles
This set of interactive web tools
is available on the website and
gives easy access to valuable
data on end of life for each
local authority area in England.
The profiles display information
on the number and proportion
of deaths in each area, by cause
and place of death. They also
show the age and gender
of those who died. Users can
compare local data with
regional and national averages,
helping the government,
commissioners and providers to identify areas of need and to plan and deliver effective health and
social care services.
The profiles, which have been developed by the South West Public Health Observatory, are presented
using the InstantAtlasTM mapping tool. This displays the indicators in map, chart and table format.
A user guide is available on the website.
For more information visit http://www.endoflifecare-­intelligence.org.uk/profiles.aspx
The end of life care profiles and the local authority level data they provide
I took a group of our MSc students onto the website and they were
amazed at how much important information they could access. They found
it extremely helpful in understanding the context for services and for future
planning."
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4. REPORTS
The network has analysed a variety of information sources and so far produced nine reports
(see pages 8,11 and 12).
Deaths from renal
diseases in England,
2001 to 2008 (2010)
This is the first study to provide such a high level overview.
Using Office for National Statistics (ONS) mortality data,
it shows the absolute numbers of deaths, where renal
diseases are either the underlying or the contributory cause.
It also provides breakdowns by age, sex and place of death.
Population pyramids illustrate the age profiles of people
dying with different types of renal disease (chronic renal
failure, acute renal failure, hypertensive renal disease,
renal ischaemia and infarction, and renal carcinoma).
This indicates likely differences in end of life care needs
depending on age and cause of death. The report will
therefore be an invaluable resource for policy makers,
commissioners and providers of care, patients, their relatives and carers and the non-­statutory bodies
who support them.
For more information visit http://www.endoflifecare-­intelligence.org.uk/resources/publications/
default.aspx#neolcin
This report is the first time anyone has pulled together, aggregated
Director
for Kidney Care, Salford Royal NHS Foundation Trust.
Thanks to the network we have been able to demonstrate to
commissioners and policy makers in primary and secondary care that
too many people with kidney disease are dying in hospital. It has also
enabled us to argue that acute kidney injury is an increasingly common -­
and treatable -­ condition, which affects one in five acute admissions to
hospital and is now a leading cause of amenable mortality and increasing
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5. disease, dementia and
senility in England (2010)
This study, which examines numbers, place of death, age
and gender profiles, uses ONS mortality data based on
death registrations for which these conditions were
recorded either as the underlying cause of death or as
a contributory cause. The data on contributory cause
recording highlights how important it is to search the entire
mortality record to get a clearer picture of the numbers
implicated, as people dying of these conditions have
specific end of life care needs. This document will therefore
be an invaluable resource to policy makers, commissioners
and providers of care, individuals, their relatives and carers
and the non-­statutory bodies who support them. An accompanying spreadsheet provides data
by primary care trust.
For more information visit http://www.endoflifecare-­intelligence.org.uk/resources/publications/
default.aspx#neolcin
physician and British Geriatrics Society dignity champion.
Palliative care physicians tend to look at this area from the perspective
of cancer and long term diseases. The information around place of death
helped both geriatricians and palliative care physicians start to think more
strategically about where the focus of future care development and training
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6. WEBSITE
OTHER RESOURCES
The network website
The end of life quality
assessment tool (ELCQuA)
This new online, self assessment tool is now
freely available to benchmark and monitor
progress against a set of core specifications,
End of life care strategy: quality markers and
measures for end of life care (2009), published
to support implementation of the national end
of life care strategy.
The website has already become a key research
tool and is used regularly by organisations
seeking information that supports
commissioning and service development.
It focuses on sharing the relevant data and
analysis about end of life care for adults
in England with the professionals who make
decisions about policy and services.
It includes data analysis, guides to key data
sources, profiling tools, publications, advice and
direct links to other useful resources, such as
the ONS mortality data and the NHS Information
http://www.endoflifecare-­intelligence.org.uk/
Manager End of Life Care at the
Merseyside and Cheshire Cancer
-­ not wordy -­ which is great.
The illustrations of what you do
and what the screen will look like
when you access certain data are
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ELCQuA uses simple traffic light assessments
and provides consistent analysis, allowing
national and local comparisons. It also enables
users to assess and track their progress in any
area of care that they consider to be a priority,
with the flexibility to add local objectives to
its calculations.
ELCQuA links operationally to the NHS Quality,
Innovation, Productivity and Prevention
Challenge (QIPP), the end of life care key
performance indicators (KPIs) and the Care
Quality Commission prompts for end of life care.
NICE is currently developing a Quality Standard
for end of life care and we plan to incorporate
this too, once it is published later in the year.
For more information go to http://
www.elcqua.nhs.uk/
Margaret Saunders, consultant
in palliative medicine at
Papworth Hospital NHS
Foundation Trust.
Once one grasps the approach,
the scope is excellent."

7. END OF LIFE CARE MODELLING TOOLS
These three new resources support service providers and commissioners to:
Identify the end of life care needs of their local population
Improve early recognition that people are approaching the end of life
Reduce the number of deaths in hospital
Understand the trajectories of different illnesses
Identify the impact on their workforce.
The Yorkshire and the Humber
commissioner financial model
Developed by NHS Yorkshire and the Humber, this uses ONS and Secondary Use Services data
to look at how many people who died in acute hospitals could reasonably have ended their days
in an alternative care setting. It also calculates the cost implications for a local population.
The cohort model
Developed by the Whole Systems Partnership, this simulates the likely key end of life care needs for
a typical population of 100,000 over time. It focuses on the implications of early recognition and
reduced hospital admissions and considers the patterns for a key range of disease trajectories.
Skills for Health functional analysis
Developed by Skills for Health, functional analysis identifies the community workforce skills required
to ensure that an individual in their last year of life receives quality care. It supports service managers
and commissioners to identify appropriate workforce structures and the required competences.
When used with the associated cohort model it will also help determine end of life care costs.
For more information go to http://www.endoflifecare-­intelligence.org.uk/models
I have been singing the praises of these NEoLCIN resources and use them
Delivering Choice programme.
Recently I used the cohort model, which has proved very useful in our
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8. OTHER PROJECTS
National survey of patient activity data
for specialist palliative care services:
MDS full report for the year 2009-2010
(NCPC/NEoLCIN, 2011)
This report provides valuable
information on hospice and
specialist palliative care services
across England, Wales &
Northern Ireland. It is the only
national collection of data
in relation to specialist palliative
care activity. The National Council
for Palliative Care (NCPC) has
been collecting and reporting
on the minimum data set (MDS)
for specialist palliative care
services for fifteen years and the
intelligence network supported
them with this most recent document. It will help inform local
service development, management and audit as well as
supporting commissioning and development of national policy.
Review, due to report later this year.
Despite the fact that, historically, specialist palliative care has
tended to be more readily accessible for people with cancer,
the latest data shows that some people with other conditions are
beginning to get better access to those services. For example,
motor neurone disease. However there is still a long way to go
to achieve equality of access for people whatever their diagnosis.
Aggregated data has been collected up to this point but the
network is currently working with the NCPC towards collecting
data for individuals and episodes of care. When linked with the
other data sets this will allow additional analysis, further
improving its potential to improve service quality and efficiency.
See the full report at http://www.endoflifecare-­
intelligence.org.uk/resources/publications/default.aspx
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NCPC workforce
survey 2010
Workforce development is
one of the key aspects to the
end of life care strategy.
The specialist palliative care
workforce has a vital role
to play both in providing care
for people with complex needs
and also in educating their
non-­specialist colleagues.
NCPC, with the NHS
Information Centre and the
Centre for Workforce
Intelligence, has carried out
a number of surveys of the
specialist palliative care
workforce in hospitals and
the voluntary sector over the
last few years, collecting data
about numbers, gender,
age and banding (for nurses).
This helps commissioners and
providers to identify gaps
or surpluses in local areas and
to plan the role the specialist
workforce might take in wider
staff development. The data
is also very relevant for
recruitment and succession
planning. The intelligence
network supported the 2010
survey, the results of which are
due to be published in
summer 2011.
For more information go to
http://www.ncpc.org.uk/site/
policyandcampaigns/
Workforce

9. End of life care locality
registers
Improving the coordination and quality of care
for people at the end of life is a major aim of
the national end of life care strategy. Because
of the range of staff involved, effective systems
for sharing information are required if people
are to die in the place of their choosing and
with their preferred care package.
Eight sites across England have been part of
a pilot programme to develop and test locality
registers as a way to share key information
wishes -­ and deliver service improvements.
An interim evaluation (carried out by Ipsos
MORI) shows the key findings, including the
principal challenges faced in setting up a
register and how these have been overcome.
This is available at http://
www.endoflifecareforadults.nhs.uk/publications/
end-­of-­life-­locality-­registers-­evaluation.
A final report, which is due in June 2011,
will provide more detail on the approach
adopted by each of the pilot sites.
To support on-­going implementation of the
registers, an application is underway with
the Information Standards Board for Health
and Social Care to develop a national
information standard that specifies a core end
of life care dataset, with agreed definitions.
Feedback from the pilots suggested that the
to change to better reflect what they are
intended to do. A new provisional name,
The Nuffield Trust report:
Social care and hospital use
at the end of life (2010)
The Nuffield Trust
compared costs
across three
primary care trusts
by using data that
links patient
records
anonymously and
provides key
information on the
use of health care
and social care by
people in the last months of life.
It found that, on average, 30 per cent used local
authority-­funded social care in the 12 months
before death and that uptake was higher
in older age groups. Use of local authority-­
funded social care increased gradually in the last
year of life, whereas NHS-­funded inpatient
hospital care increased sharply -­ particularly in
the final two months.
While a direct causal link cannot be confirmed,
it does suggest that any reductions in the
availability of local authority-­funded social care
might increase demand for hospital services.
A more detailed follow-­up study has been
commissioned to provide a better
understanding of the full care picture for people
at the end of life.
The full report can be viewed at
http://www.nuffieldtrust.org.uk/publications/
detail.aspx?id=145&prID=752
is proposed.
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10.
VOICES
The lack of reliable methods for collecting information on personal experiences is a major
challenge for end of life care research.
It can be very difficult to obtain the views of people nearing the end of life because
they are often too ill to be interviewed or to complete a questionnaire. Some may
deteriorate very rapidly and unexpectedly.
An alternative is to approach bereaved relatives and friends to seek proxy views.
The VOICES questionnaire, which was first developed in the 1990s by Professor Julia
Addington-­Hall, has been frequently used for this purpose.
The Department of Health and the University of Southampton have recently tested
a shortened version, called VOICES-­SF. This asked 58 questions designed to find out
national end of life care strategy. A report on the pilot will be published this summer
and will inform the implementation of a national survey of bereaved people.
The questionnaire is posted to a randomly selected group of bereaved relatives, and
so far tests have shown it to be a sensitive and successful measurement tool which can
for example detect variations between care settings, by place or cause of death.
The valuable information this approach provides can be used to monitor end of life care
and to direct service improvements, prioritising the needs and views of users.
For more information go to http://www.endoflifecareforadults.nhs.uk/news/all/new-­voices
-­website and http://www.southampton.ac.uk/voices
NEoLCIN user group
Established to draw on user experiences and personal knowledge of end of life care.
Members are consulted on the network's website, publications and other products
and they also have input into the NEoLCIN Stakeholder Group. This ensures that the user
perspective is firmly embedded in everything the network does.
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11. OTHER REPORTS FROM THE NETWORK
Deaths registered as occurring
011)
Uses ONS mortality data to examine deaths that are registered as occurring at a
establishment and how they vary by age and sex.
External causes of death (2011)
Examines variations in death from 'external' causes (including injuries, falls,
self harm, assault and poisoning) by age, cause and sex.
Predicting death: estimating the proportion of
011)
Compares data from a number of sources, to estimate the proportion of
registered deaths which may be unexpected and are therefore unlikely to be
included in an end of life care register.
Deaths in older adults in England (2010)
Provides data that highlights the importance of understanding the differing
needs of older adults at the end of life.
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12.
Variations in place of death in England:
inequalities or appropriate consequences of
age, gender and cause of death? (2010)
Highlights key analysis of the end of life care profiles indicator sets and
additional data, breaking down place and cause of death by age and sex.
Deaths from neurodegenerative diseases in
England, 2002 to 2008 (2010)
Analyses the ONS mortality data to give insight into differences in numbers,
rates and place of death for selected neurodegenerative diseases.
These reports can be found at http://www.endoflifecare-­intelligence.org.uk/resources/publications/
default.aspx
Contact info
www.endoflifecare-­intelligence.org.uk
Contact: information@neolcin.nhs.uk for more
information
National End of Life Care Intelligence Network
3rd Floor
St John's House
East Street
Leicester
LE1 6NB
Telephone: 0116 222 5103 / 5107
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Over the last year the NEoLCIN has
worked in close partnership with the
National Cancer Intelligence Network
and the South West Public Health
Observatory.