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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.
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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.
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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.
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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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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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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WEBSITE OTHER RESOURCES
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
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.
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."
The network website
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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
END OF LIFE CARE MODELLING TOOLS
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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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
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
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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
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,
is proposed.
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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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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.
OTHER REPORTS FROM THE NETWORK
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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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.
Contact info www.endoflifecare-intelligence.org.uk
Contact: [email protected] 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
These reports can be found at http://www.endoflifecare-intelligence.org.uk/resources/publications/default.aspx
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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.