End of Life Care Strategy
Fourth Annual Report
‘How people die
remains in the memory
of those who live on’
Dame Cicely Saunders
Founder of the Modern Hospice Movement
October 2012
End of Life Care Strategy: Fourth Annual Report
2
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End of Life Care Strategy Fourth Annual Report
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End of Life Care Strategy: Fourth Annual Report
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End of Life Care Strategy: Fourth Annual Report
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Contents
Contents ..................................................................................................................................... 4
Foreword .................................................................................................................................... 6
Executive Summary ................................................................................................................... 8
Chapter 1: Meeting the challenges of end of life care .............................................................. 11
End of Life Care and the NHS Commissioning Board .............................................................. 11
The Mandate, NHS Outcomes Framework and Commissioning Outcomes Framework .......... 12
The National End of Life Care Programme .............................................................................. 12
Quality, Innovation, Productivity and Prevention (QIPP) .......................................................... 12
Palliative Care Funding ............................................................................................................ 14
The Social Care White Paper - Caring for our future: reforming care and support ................... 15
Chapter 2: The Information Revolution for people approaching the end of life ........................ 16
The Information Strategy .......................................................................................................... 16
Dying Matters ........................................................................................................................... 16
The National End of Life Care Intelligence Network (NEoLCIN) .............................................. 20
Electronic Palliative Care Coordination Systems (EPaCCS) .................................................... 21
VOICES.................................................................................................................................... 22
Equality Issues ......................................................................................................................... 25
Housing .................................................................................................................................... 27
Research .................................................................................................................................. 27
Chapter 3: Improving outcomes for people approaching the end of life: identification and care
planning.................................................................................................................................... 28
Find Your 1% ........................................................................................................................... 29
AMBER Care Bundle ............................................................................................................... 31
Advance Care Planning (ACP) ................................................................................................. 32
DNACPR .................................................................................................................................. 35
Choice ...................................................................................................................................... 37
Dementia – the Prime Minister’s Dementia Challenge ............................................................. 37
Cancer...................................................................................................................................... 39
Social Care ............................................................................................................................... 39
Chapter 4: Improving outcomes for people approaching the end of life: coordination and
delivery ..................................................................................................................................... 45
EPaCCS ................................................................................................................................... 45
The acute sector – the Transform Programme ......................................................................... 53
End of Life Care Strategy: Fourth Annual Report
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Carers’ Strategy ....................................................................................................................... 55
Hospice Capital Grant .............................................................................................................. 56
Chapter 5: Improving outcomes for people approaching the end of life: the last days of life and
care after death ........................................................................................................................ 57
Rapid discharge home to die pathway (Transform Programme Key Enabler).......................... 57
The Liverpool Care Pathway (LCP) for the Dying Patient ........................................................ 59
National Care of the Dying Audit Hospitals (NCDAH) Round 3 ................................................ 60
Death certification .................................................................................................................... 61
Bereavement ............................................................................................................................ 61
Tell Us Once ............................................................................................................................ 62
Chapter 6: Improving outcomes for people approaching the end of life: commissioning and
levers for change ...................................................................................................................... 64
Commissioning in the new NHS ............................................................................................... 64
NICE Quality Standard and guidance for commissioners ........................................................ 65
End of Life Care Quality Assessment (ELCQuA) ..................................................................... 66
Workforce ................................................................................................................................. 66
Personal health budgets .......................................................................................................... 70
Palliative Care Funding ............................................................................................................ 70
Appendix – publications from the National End of Life Care Programme and the National End
of Life Care Intelligence Network ............................................................................................. 72
End of Life Care Strategy: Fourth Annual Report
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Foreword
The NHS is currently undergoing transformational change. This
includes a complete revision of the Department of Health itself,
the emergence of the NHS Commissioning Board and the
development of a new Improvement Body.
Over the past few years end of life care has itself been in the
process of transformational change. That change has been
driven by innumerable partnerships, working to a common
agenda set out in the End of Life Care Strategy published in
2008. This report shows how far we have come in just four years. As we handle the
process of transition from the old structures to the new, it is salutary to revisit the
strategy’s big ideas and to see how they have been turned from paper to reality.
To tackle the taboo on discussing death, the Strategy proposed “A national coalition
to raise the profile of end of life care and to change attitudes to death and dying in
society”. The National Council for Palliative Care has set up the Dying Matters
coalition. From a standing start in 2009 it now has more that 20,000 members. This
year’s Awareness Week has been evaluated as reaching more than 170,000 people
through events and activities run by Dying Matters members, while the Dying Matters
website received record numbers of visitors, with almost 100,000 page views - an
increase of 230% on last year’s awareness week.
“Care plans, including the person’s preferences, wishes and views on resuscitation,
should be available to all who have a legitimate reason to access them … Holding
the plan electronically will facilitate this…” Electronic Palliative Care Coordination
Systems (EPaCCS for short, or locally named like London’s Coordinate My Care)
are now either in place or in development across the country. More to the point,
outcomes data show that they are making a major contribution to enabling people to
be cared for and to die in their place of choice.
“Following appropriate modification and piloting, regular surveys of bereaved
relatives will be commissioned by the Department of Health ...”. We have just had
the results of the first national VOICES survey. This gives us the first systematic
account of how people actually experience care in the last three months of life,
whether they are in hospital, in a care home, a hospice or at home, or whether their
care involves a combination of different settings. This sort of information is vitally
important to local providers and commissioners – not just to show them how they
compare, but to help them to track improvement.
“...The Department of Health will commission the development of an End of Life Care
Intelligence Network.” The National End of Life Care Intelligence Network took off in
2010. Its members – data owners and users from the statutory and voluntary
sectors – have enabled South West Public Health Observatory to bring together
different datasets which have transformed end of life care intelligence from
something relying almost entirely on mortality data, into a wide range of themed
End of Life Care Strategy: Fourth Annual Report
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reports and locality profiles. What We Know Now… demonstrates the range of
intelligence available now that simply did not exist in 2008.
These are just some of the most notable achievements. This report goes into more
detail, including examples of how different areas are using the national tools and
intelligence and innovating locally.
But we haven’t finished.
The challenge now is to make sure that we take all of this progress into the new
organisations. We have demonstrated that end of life care can bring together health,
social care and the voluntary sector, to the benefit of those approaching the end of
life, their carers and families. This is truly an area of work which unites rather than
divides.
We have benefited hugely from our committed champions across the organisations
and across the sectors. Inevitably, in such a major reorganisation, some of them will
move away. Some will be able to promote this work from new positions – for my
part, I shall be as committed in my new role at Imperial as I was in my old one at
Marie Curie. We have sadly to relinquish Professor Sir Mike Richards, who has
provided such outstanding leadership as National Clinical Director for End of Life
Care, to new responsibilities but I know that he will not miss any chance to improve
this area of care too. And we are delighted that Dr Martin McShane will be the new
champion for end of life care in the NHS Commissioning Board.
The End of Life Care Strategy says “How we care for the dying is an indicator of how
we care for all sick and vulnerable people. It is a measure of society as a whole and
it is a litmus test for health and social care services”. This is as true today as it was
in 2008.
This report is a chance to celebrate the progress we have made, and to take stock
for the challenge ahead.
Sir Tom Hughes-Hallett
Chairman, End of Life Care Strategy Implementation Advisory Board
End of Life Care Strategy: Fourth Annual Report
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Executive Summary
Dear Secretary of State
I am delighted to present the fourth annual report on progress in
implementing the End of Life Care Strategy.
Last year I was able to report a growing recognition of the
importance of end of life care, against a backdrop of preparation
for the full implementation of the NHS reforms. This year the
reforms have moved to centre stage but end of life care has
continued to be a priority, as was evidenced by the number and
range of case studies offered for inclusion in this report. We have seen important
developments in embedding many of the key elements set out in the Strategy.
We are also able to point to tangible progress in improving end of life care. Deaths
in usual place of residence (DiUPR) – the main marker of progress for the Strategy
as well as the first Key Performance Indicator for our Quality, Innovation, Productivity
and Prevention (QIPP) workstream - are continuing their steady rise, accompanied
by a drop in deaths in hospital. I can report that, nationally, 42.4% of people are now
dying at home or in a care home. While this does not necessarily capture individual
patient choice it is nonetheless a good proxy. I am especially encouraged to note
that progress is visible in all of the old Strategic Health Authority regions, regardless
of their baseline. London, which had the lowest starting point, has made progress
comparable to the South West, which started highest.
Dying Matters continues to make major strides towards engaging the public and
tackling the taboo of discussing death and dying. Its membership now stands at
more than 20,000. This year’s Awareness Week in May was marked by a vast
amount of local activity, suggesting that Dying Matters’ members are taking
ownership of the agenda in their area. Over that week there were also more than
400 pieces in the print media, including mainstream national papers. This is in
marked contrast to the picture when the National Council for Palliative Care
accepted the challenge to set up the Coalition in 2009.
Find Your 1%, which aims to engage GPs in identifying the individuals on their lists
who might be in their last year of life, so that they can undertake end of life care
planning with them, has reached its midpoint target of 1,000 GPs signed up by
August 2012.
We are also starting to see excellent results from Electronic Palliative Care
Coordination Systems (EPaCCS). These record people’s actual choice for their
place of care; and where they are best established they are already showing
significant reductions in hospital deaths and as many as 80% of people dying in their
preferred place. EPaCCS are now spreading rapidly across the country, supported
by the National End of Life Care Programme (NEoLCP), an Information Standard
and work on interoperability. The more they become the norm the more we can rely
on the DiUPR data as a close match for actual choice.
End of Life Care Strategy: Fourth Annual Report
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We also have the results from the first ever national VOICES survey of bereaved
relatives. These provide a mine of fascinating information on the quality of care
delivered in the last three months of life. Not surprisingly, hospice care is the most
highly rated, followed by care at home. However, care in care homes is only
narrowly behind. Care provided to people dying in hospitals was rated much more
poorly. This is an area which needs to be given very high priority, as hospitals are
likely to remain the most common place of death, even with a shift to community-
based care.
VOICES still has much to tell us in the freetext responses, which are currently being
anonymised to make the material useable for research. While many comments
highlighted poor experience this was often in order to contrast it with better care in a
different setting or from different staff. The single longest contribution, which ran to
51 pages, was about excellent care.
VOICES is being run now for its second year. At present we can analyse the data to
PCT cluster level, which already shows wide variations. The cumulative data from
successive surveys will allow us to look in more detail at different localities as well as
to start tracking progress in the different care settings. It is also the source of an
Indicator in Domain 4 of the NHS Outcomes Framework, ensuring that it will be a
priority for the NHS.
Picking up the challenge illustrated by the VOICES findings, the NEoLCP’s
Transform programme for the acute sector started working with 25 Trusts. Because
of intense interest another 40 hospitals will be attending shared learning events this
autumn. Transform is based on the Route to Success for the acute sector. The
programme is centred on five key enablers – Electronic Palliative Care Coordination
Systems, Advance Care Planning, the AMBER Care Bundle, the rapid discharge
home pathway, and the Liverpool Care Pathway.
The National End of Life Care Intelligence Network has added significantly to the
information available and useful to both commissioners and providers. Its locality
profiles now include information about social care and can be viewed at local
authority level. A summary of What We Know Now brings together key information
which was not available before the Network started its work. From its new home in
Public Health England it will continue to provide the information commissioners and
providers need to carry out their roles. For example, it will continue to host the End
of Life Care Quality Assessment (ELCQuA) tool for benchmarking and tracking
progress, revised to align it to the new NICE Quality Standard for end of life care for
adults. All of this is readily available on the Network’s website.
In April responsibility for the End of Life Care Strategy will move from the
Department of Health to the NHS Commissioning Board where it will be the
responsibility of the Board’s Medical Directorate. The work will form part of Domain
2 – Long Term Conditions. This makes a good match. Much of the work which is
now bearing fruit for end of life care – EPaCCS, and integrated care, for example –
will be of interest in improving care for conditions such as dementia, helping to
deliver on the Prime Minister’s Dementia Challenge. End of life care will also have
relevance to the other Domains, whether they focus on urgent care or on patient
End of Life Care Strategy: Fourth Annual Report
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experience. The second VOICES survey will add richness and depth to our
understanding of how people experience end of life care.
As Strategic Health Authorities and Primary Care Trusts wind down, so Clinical
Commissioning Groups (CCGs) are beginning to pick up their role in commissioning
and promoting these services. The NEoLCP has been working with a network of
about a hundred CCGs to ensure not only that they know about the wealth of
resource already available to them on end of life care, but that we listen to them and
tailor support to their needs. The NEoLCP has also been supporting a network of
about 360 end of life care facilitators, who are based in all parts of the service, and
has established a new group of more than a hundred social care champions. These
people will help to ensure that end of life care is embedded in new plans in the future
health and social care landscape.
Ministers have made a commitment to evaluate progress on end of life care to
determine whether it is possible to introduce a right to choose to die at home. Over
the next year the focus will continue to be on supporting people to be cared for and
to die in their place of choice, providing community-based services to enable this to
happen. Integration of services is key to this and will be a theme for the new
Improvement Body, which will enable us to continue to work with our range of
partners in the statutory, voluntary and private sectors. At the same time the
Transform programme will continue to support improvement in end of life care in
hospitals.
We shall also see progress on Palliative Care Funding, as the eight pilots start to
generate the data needed to take forward the work started by the independent
Palliative Care Funding Review.
The progress we have seen to date is the summation of a great deal of work by a
wide range of individuals including those in the Strategic Health Authorities and
Primary Care Trusts, as well as the National End of Life Care Programme. I should
like to take this opportunity to offer them my personal thanks.
It has been a privilege to lead work on end of life care. I am delighted to be able to
hand it on to Martin McShane in such good shape.
Professor Sir Mike Richards
National Clinical Director for End of Life Care
End of Life Care Strategy: Fourth Annual Report
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Chapter 1: Meeting the
challenges of end of life care
End of Life Care and the NHS Commissioning Board
The Mandate
The NHS Outcomes Framework
The Commissioning Outcomes Framework
The National End of Life Care Programme and the new
Improvement Body
Quality, Innovation, Productivity and Prevention - QIPP
Palliative Care Funding
The Social Care White Paper – Caring for our future
End of Life Care and the NHS Commissioning Board
Responsibility for end of life care, and for the End of Life Care Strategy, is to move
from the Department of Health to the NHS Commissioning Board from April 2013.
As it is an overarching topic, the work will necessarily span the three Domains of the
NHS Outcomes Framework that are the responsibility of the Board’s Medical
Directorate. However, its ‘home’ Domain will be Long Term Conditions. This should
ensure continuity and build on the progress made since the Strategy was launched
in 2008.
Clinical Commissioning Groups – North Hants CCG
North Hants CCG has developed and implemented an end of life care pathway for all
patients thought to be in the last 12 months of life. This has been a collaborative
effort between the CCG, Hampshire Hospitals Foundation Trust, St Michael's
Hospice, Southern Health and Adult Social Services. The development of six
integrated care teams covering the area has been key to the pathway. Two of the
teams have a social worker directly involved as a pilot. The 'Find the1%' campaign
has been used to identify end of life patients and this has been linked to the long
term conditions work through the use of the Adjusted Clinical Groups (ACG) GP-
based risk stratification tool. The local Electronic Palliative Care Coordination
System/ End of Life Care Locality Register is about to go live which will be vital for
communication between the agencies involved in the care of these patients. The
CCG has also developed a 'Gold card' scheme which identifies these end of life care
patients to health and social care professionals as well as helping patients access
appropriate care.
Charlotte Hutchings, EoLC Lead, North Hampshire CCG
End of Life Care Strategy: Fourth Annual Report
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The Mandate, NHS Outcomes Framework and Commissioning
Outcomes Framework
The NHS Commissioning Board will work to a mandate set by the Department of
Health. The draft Mandate went out to consultation in July, with a deadline for
responses of 26 September. The final mandate will be published in the autumn to
come into force in April 2013.
The draft mandate sets objectives for improving outcomes and reducing inequalities
in each of the five Domains of the NHS Outcomes Framework. Domain 4 of the
Framework focuses on ensuring that people have a positive experience of care and
includes an Indicator based on the VOICES survey. This uses the views of
bereaved relatives to assess the quality of care provided to dying people and their
families across the range of care settings and conditions, as well as by geography.
The NHS Commissioning Board Authority is developing a Commissioning Outcomes
Framework which will translate the outcomes in the NHS Outcomes Framework into
measures which make sense at clinical commissioning group population level. This
will have its first iteration in 2013/14. The NHS Commissioning Board will decide
priorities for future development in discussion with partner organisations, including
how to reflect indicators for the NHS Outcomes Framework in future iterations of the
Commissioning Outcomes Framework.
The National End of Life Care Programme
Since 2008 implementation of the Strategy has been supported by the National End
of Life Care Programme (NEoLCP). The NEoLCP’s collaborative working with a
wide range of partners in the statutory, voluntary and private sectors has been a
critical factor in developing and maintaining engagement in this area, and in driving
the encouraging progress towards the Strategy’s objectives. An external evaluation
highlighted the NEoLCP as a ‘trusted hub’ and a driving force for change.
The health and care system requires nothing less than transformational change to
ensure continued provision of high quality, affordable services, free to users at the
time and point of need. Given this context – no significant growth in resources and
major system change – there needs to be an integrated, systematic approach to
large scale change. Improvement services are a critical component in the mix and a
new Improvement Body (nIB) is being established to support this. The nIB will be
formed from elements of some current improvement bodies, and this includes the
NEoLCP.
Quality, Innovation, Productivity and Prevention (QIPP)
End of life care has benefited from its status as one of the Quality, Innovation,
Productivity and Prevention (QIPP) national workstreams. This has adopted, as a
key performance indicator (KPI), the measure we have been using for the End of Life
Care Strategy itself: to improve the proportion of people who die in their usual place
End of Life Care Strategy: Fourth Annual Report
13
of residence, which combines people’s own homes and care homes. We are now
able to track this on a quarterly basis using mortality data from the Office for National
Statistics. These data show a steady improvement in this KPI at both national and
old Strategic Health Authority levels.
It is especially encouraging to note that it is not just the areas which have historically
performed well which have improved here. We are able to see similar improvements
in the South West, which had the highest baseline, and in London which had the
lowest. The continuing improvement in the South West also suggests that we have
not yet reached the ceiling: there is still headroom for even the best performers to do
better.
End of Life Care Strategy: Fourth Annual Report
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Previous reports have illustrated full calendar year data on place of death across the
range of settings – hospital, care home, home, hospice and other. 2011 data show
the increase in deaths at home to 21.8% and in care homes to 19.4%, while hospital
deaths dropped to 51%.
Percentage of deaths by place-of-death category, England, 2008-2011.
ONS Death Registrations data
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
2008 2009 2010 2011
%
o
f
d
e
a
t
h
s
Other
Hospice
Care Home
Home
Hospital
We have been working to develop two additional KPIs to help drive and measure
improvements in both quality and productivity. KPI2, "To reduce the number of
hospital admissions of 8 days or more, which end in death. This is based on clinical
need, quality of care and individuals' preferences" is currently being piloted in five
areas to ensure that it is practical and that it does not introduce any perverse
incentives. Work on developing a third KPI has focussed on emergency admissions
in the final year of life. Analysis of the data suggests that this is a more complex
area than expected. The current intention, being tested for validity by further
analysis, is to develop a dashboard mapping emergency admission by condition so
that local commissioners can target their attention where it is most needed.
The QIPP work for end of life care has concentrated on the early part of the pathway,
identifying people who are approaching the end of life and planning their care, and
on care coordination. Key initiatives involved – Dying Matters, Find Your 1%,
Advance Care Planning, Electronic Palliative Care Coordination Systems (EPaCCS),
the Transform programme for the acute sector, VOICES and Do Not Attempt
Cardiopulmonary Resuscitation – are reported on throughout this document.
Palliative Care Funding
The Coalition agreement included a commitment to developing a per-patient funding
system for palliative care:
End of Life Care Strategy: Fourth Annual Report
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“And so that proper support for the most sick children and adults can continue
in the setting of their choice, we will introduce a new per-patient funding system
for all hospices and providers of palliative care.”
The final report of the independent Palliative Care Funding Review in July 2011 set
out a series of recommendations to create a fair and transparent funding system for
palliative care. The Review found the current system “overly complicated, difficult to
navigate and not joined-up enough, leading to a lack of fairness and transparency for
commissioners, providers and patients. The system is focused on providers and not
patients.”
To take this work forward the Department has identified eight pilot sites, seven for
adult and one for children’s services, which between them bring together 93
separate organisations across the statutory and voluntary sectors. They will gather
the data we need on a range of patient characteristics, such as problem severity,
functional level and phase of illness, to understand the national picture for palliative
care resource use and associated costs. These data will inform the development
and refinement of a classification system categorising palliative patients according to
level of need, and attach resource use/ costs to each of the levels of need in the
classification system, which will support the tariff development.
The Social Care White Paper - Caring for our future: reforming care and
support
End of life care spans both health and social care. QIPP highlights this connection:
its emphasis on quality means providing good care where people want it, in the
community, while the focus on productivity means avoiding unnecessary hospital
stays. Both of these mean improving community-based services, including end of
life care in care homes. This is reflected in the White Paper on social care, Caring
for our future: reforming care and support, published by the Department of Health in
July, which says:
“There has also been strong support for the [Palliative Care Funding]
Review’s recommendation that ‘once a patient reaches the end of life stage,
and is put on the end of life locality register, all health and social care should
be funded by the state and be free at the point of delivery’. We think there is
much merit in providing free health and social care in a fully integrated service
at the end of life.”
The White Paper goes on to say that the Government will work with the Palliative
Care Funding pilot sites to collect the vital data and information needed to assess
this proposal, and its costs. A decision on including free social care at the end of life
in the new funding system will be informed by the evaluation of the pilots, and an
assessment of resource implications and overall affordability.
In recognition of the scale of the task in getting these issues right, the Government
has doubled its investment in the pilot sites from £1.8 million to £3.6 million to ensure
we have the information needed for implementation.
End of Life Care Strategy: Fourth Annual Report
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Chapter 2: The Information
Revolution for people
approaching the end of life
The Information Strategy
Dying Matters
The National End of Life Care Intelligence Network and Public
Health England
Electronic Palliative Care Coordination Systems (EPaCCS)
and the Information Standard
VOICES
Equality Issues and Equality Impact Assessment
Research
“Itisgoodsomeofthesequestionsarebeingasked.”
“Iamreallypassionatethatlessonsarelearnt.”
“Iamwritingthisforallthepeoplewhoarecompletelyatthemercyofthesystemandhaveno-oneto
beanadvocateforthem.”
“Ifounditcathartictowriteitdown”.
“IamdisgustedwithXhospitalandhertreatmentthere.Ageismisrife”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
The Information Strategy
In May the Department published its information strategy - The power of information
– which sets a ten-year framework for transforming information for the NHS, public
health and social care. The focus is on improving access to information and
ensuring the support needed to use and understand it. It is about making sure that
everyone benefits equally from information about care services. It also emphasises
how health and care professionals can use connected information and new
technology to join up and improve services, to inform the decisions they make and to
help deliver safer, more integrated care.
There is a range of work going on in just these areas to implement the End of Life
Care Strategy.
Dying Matters
The Dying Matters national coalition was set up in 2009, led by the National Council
for Palliative Care, to tackle the taboo on discussing death, dying and bereavement.
Since then it has, year on year, increased its membership, reach and impact.
End of Life Care Strategy: Fourth Annual Report
17
Membership now stands at over 20,000, including charities, care homes, hospitals,
hospices, funeral directors, legal and financial organisations and major employers.
Dying Matters Awareness Week, which ran this year from 14-20 May 2012, is for
many members the focus of their activities. ComRes research for the Awareness
Week found that more than three-quarters of the public agree that if we felt more
comfortable talking about dying, death and bereavement it would be easier to have
our end of life wishes met. This will be supported by the wealth of activity during the
Week. Highlights included:
• Events and activities by Dying Matters members directly reached over
170,000 people, with investment from members amounting to £110,000 and
with over 11,000 hours of volunteer time provided.
• Extensive media coverage for Dying Matters Awareness Week, with 400
separate pieces of media coverage, including articles in six national
newspapers, including a powerful article in the Daily Telegraph by the
Archbishop of York, Dr John Sentamu, and across health and social media.
There was also substantial broadcast coverage, including on BBC Breakfast
TV, BBC Radio 4, BBC Radio 5 and across regional media.
• The Dying Matters website www.dyingmatters.org received record numbers of
visitors, with almost 100,000 page views (an increase of 230% on last year’s
awareness week) and significant increases in social media followers. Social
networking enables dialogue and direct messaging from the public and all
posts / tweets / comments are monitored providing feedback such as:
“‘My Grandmother sadly passed away last Friday. Prior to her passing I found
your website and spent some time reading through all the information on it. I
believe that this helped me to prepare for her death, and it certainly gave me
the confidence to be with her, before, during and after she had departed. I
now feel very differently about death and dying, and firmly believe that it truly
does matter how, when and where we die and it should not be hidden away
and feared”
• The range of free postcards and posters for the awareness week, focusing on
the small actions that individuals, organisations and communities can take,
proved to be a real hit with excellent feedback received. In all, over 200,000
Dying Matters promotional items were distributed in the run up to the
awareness week.
• Final Chapters, the first ever creative writing competition on end of life,
received a staggering 1,400 entries. Winning and highly commended entries,
which were read out by actors Peter Eyre and Barbara Flynn, were
announced at a highly successful event during the awareness week hosted
and supported by BT and chaired by publisher and writer Carmen Callil.
End of Life Care Strategy: Fourth Annual Report
18
Cheshire and Merseyside Community Engagement Initiative on Death, Dying
and Loss
The 2008 End of Life Care Strategy called death “the last great taboo in our society”.
The North West Clinical Pathway Group (2008) identified as one of its 11 key
recommendations “A public campaign should be established to raise awareness
about end of life care resulting in a more open conversation within society which also
engages people’s views about death and dying”. This recommendation was
mirrored in the evaluation of the Merseyside and Cheshire Cancer Network (MCCN)
Dying Matters Week in 2010.
North West Multi-Professional Education and Training Levy (MPET) monies were
identified by MCCN to engage the public at the local level and build on the work of
the Dying Matters Coalition. The plan was to work with the local hospices or end of
life care Locality Groups, with a named individual taking the lead in organising a
number of community engagement events.
This approach had broad support across the network, as it did not focus on a single
period of time, such as the national Dying Matters week, but would be continued
over weeks and months and would work beyond health services. To support the
hospice/locality lead(s) the following was planned and delivered.
Mary Mathieson, Director for Conversations for Life, held a workshop for all leads,
explaining the concept of community engagement and how to go about identifying
and engaging with up to 30 community leaders. She then held a one day event local
to each area, with the hospice/locality lead and the community leaders, which was
followed up with a further half day session with the same group entitled “moving to
action”, helped the group to plan what they did over the following weeks and months.
There were funds to support the local action plans and there was support from a
media company, secured and funded through the Network to work in a bespoke way
with each local team. Each lead was asked to submit their community engagement
plan, with a progress report, including how funding had been committed part way
through and at the end of the year.
Since 2011, six areas have held community engagement events (Wirral, Southport,
Aintree and Halton, Central and South Liverpool and Western Cheshire). These
events have been well received. The various organisations have established
community groups to discuss the topic of death, dying and loss in their own
communities and follow up meetings have occurred in autumn 2011 and in 2012.
These groups are either linked to current groups, for example, LINKs (local
involvement networks) in Halton or new Groups, The Bucket Group, in Central and
South Liverpool, and Dying to Know Group, supported by Voluntary and Community
Action Wirral, and Western Cheshire Sub Group – Living Well Dying Well. Other
organisations across the network have become involved e.g. The Salvation Army,
local sixth form colleges etc. and are supporting the local end of life care teams to
drive this forward.
End of Life Care Strategy: Fourth Annual Report
19
An evaluation of this initiative is being undertaken to analyse the changes as a
consequence of this piece of work. The next stage is to look at the future
sustainability of the groups and to link to the public health agenda.
Elaine Owen, End of Life Care Service Improvement Lead for Acute
and Specialist Services. [email protected]
• The launch of the Small Actions, Big Difference photography exhibition
featuring work by the photographer Nadia Bettega, showing the differences
that can be made at the end of life. Following a highly successful launch and
national media coverage, this is now touring the country and is available to
Dying Matters members.
• The Awareness Week launched two new short films which are available to
view at www.dyingmatters.org. Last Laugh, produced by Picturewise
Productions with support from Dying Matters Bolton, St Anne’s Hospice in
Manchester and Bolton Hospice, features Alexei Sayle exploring the value of
humour with terminally ill people, whilst I didn’t want that examines what
happens if you don’t make your end of life wishes known.
• All Dying Matters materials have been produced in partnership with people
with personal experience to ensure the language and tone resonates with the
public.
• A new leaflet entitled Time to Talk focusing on opening up conversations with
people with dementia (produced on request of GPs), was launched in
Parliament by the Minister for Care Services, Paul Burstow MP, APPG Chair,
Fabian Hamilton MP, National Clinical Director for Cancer and End of Life
Care, Professor Sir Mike Richards, and Dying Matters Chairman, Professor
Mayur Lakhani.
• Dying Matters’ 30 minute film Dying to Know was accepted to be screened at
the Cannes Film Festival – there was so much interest the film was screened
twice with people sitting on the floor due to limited seating. There has been
significant international interest from people considering bulk orders and
screening the film on TV as well as replicating the Dying Matters model in
various countries.
• The GP training project continues to go from strength to strength with
evaluations continuing to show significant improvements in the confidence of
GPs to initiate and undertake end of life care conversations with patients. The
training DVD has been particularly successful with work already beginning on
the second in the series focusing on patients with dementia. Positive
comments have been considerable. One especially striking story comes from
a GP who appeared in the DVD:
“The scenario I used was from a real patient called Ronald James Smith. He
died suddenly at home today with his PPC/DNAR on the coffee table and wife
next to him. I told his wife about us making this film based on the
conversations we had had. She was very moved (and so was I actually) that
End of Life Care Strategy: Fourth Annual Report
20
he may have a lasting legacy. Can my part of the DVD be dedicated to the
memory of Ronald James Smith (1929-2012)? What we did and said worked
well for him.”
Dr Nightingale then wrote: ‘‘Mrs. Smith has given some money to me and I
would like to buy 13 copies of the DVD for all the GP practices in our
consortium to have a copy.”
• The train the facilitator programme got underway in September 2012
supported by the National End of Life Care Programme (NEoLCP) and will
allow those who have undertaken the training to be trained in facilitation to
cascade the training further in their own localities.
The National End of Life Care Intelligence Network (NEoLCIN)
The NEoLCIN was set up to address the lack of routine data, information and
intelligence on end of life care. It aims to improve the collection and analysis of
nationally available information, providing significant insight into end of life care in
order to drive improvements in the quality and productivity of services.
Over the last year, the NEoLCIN has produced a range of reports covering specific
conditions and topics such as equality. This report summarises the highlights.
The NEoLCIN’s partners at Cicely Saunders International produced the report Local
Preferences and Place of Death in Regions within England 2010. This compares
people's preferences for place of death with actual place of death, as recorded by
Office for National Statistics (ONS) mortality data.
The NEoLCIN’s key partners at the South West Public Health Observatory produced
a report on Deprivation and Death: Variation in place and cause of death. This
report looks at patterns of death in England by socioeconomic deprivation. It
examines the interaction between deprivation, sex and age group, and place and
underlying cause of death and improves our understanding of deprivation as a key
factor influencing end of life care, and adds to the evidence base for those making
decisions about the provision and commissioning of care and aiming to reduce
inequalities.
The report on Deaths from Liver Disease hit the attention of the media when it was
published in March. This report presents the latest data on place of death for those
with liver disease and shows how this varies with sex, age, region and
socioeconomic deprivation. It included some important public health messages:
• Liver disease causes approximately 2% of all deaths but the number of
people who die from liver disease in England is rising;
• 90% of people who die from liver disease are under 70 years with more than 1
in 10 deaths of people in their 40s. More men than women die from the
disease;
• Alcohol-related liver disease accounts for 37% of all liver disease deaths
which is more prevalent in more deprived areas.
End of Life Care Strategy: Fourth Annual Report
21
The work of NEoLCIN is led by a group of stakeholders, bringing together the
various holders of information, analysts, national charities, researchers and key
users of this intelligence in order to benefit from their wide experiences and
expertise. The What we know now that we didn’t know a year ago report published
in May highlights the range of intelligence that we have gained over the last year
through the work of the network and its partners. It pulls together key findings from
studies and surveys to provide an insight into the pattern of death and dying in
England which can be used as a lever for change.
The NEoLCIN website houses a series of locality profiles which commissioners and
providers can use to inform their service planning and to compare themselves with
their peers. In summer 2012 the profiles were updated with new profiles for each
PCT in England which can be viewed as a table chart or map using InstantAtlas
interactive mapping tool or downloaded as a PDF for each PCT in England. A
second set of profiles has also been produced for Local Authorities which for the first
time include a set of social care indicators. The profiles present over 40 indicators
relating to end of life care and allow easy comparison of a locality’s position to
England and the current SHA. The mapping tool also enables comparison of one
local authority or PCT with another.
Eight sites across England were selected as early adopters for the end of life care
modelling tools. This suite of three modelling tools the Cohort model, the Yorkshire
& Humber Co-Design Model and the Workforce Functional Analysis model and are
designed to support end of life care commissioning and planning through analytical
modelling to provide better understanding of local need for services and an indication
of workforce and cost implications. The early adopters have been involved in testing
the tools, applying local data and statistics to the models, learning about the tools
and their implementation and then putting them into action. Case studies from the
early adopters are available on the website. The tools and work books have now
been updated and are all available on the website with a comprehensive range of
support resources available for organisations interested in using these approaches
to better understand their needs and to project the impact of change.
From the autumn NEoLCIN will have access to new linked data sets of ONS
mortality data and hospital activity which will give more up to date information and
will allow it to better track delivery of the End of Life Care Strategy.
For the future, from April 2013 the NEoLCIN will come under the umbrella of Public
Health England to ensure that it continues to build on the solid foundations it has
established.
Electronic Palliative Care Coordination Systems (EPaCCS)
EPaCCS is the term now in use for the locality registers for end of life care described
in the End of Life Care Strategy. EPaCCS’ main purpose is to facilitate coordination
of care for individuals approaching the end of life. Chapter 4 of this report provides
more detail. They are not primarily data capture systems but a valuable spin-off
benefit is their ability to track progress locally. The more EPaCCS systems are
End of Life Care Strategy: Fourth Annual Report
22
adopted, the more useful these data will be for comparisons between localities and
against national data.
The NEoLCP and the Department developed a national information standard to
underpin EPaCCS (End of Life Care Co-ordination: core content
1
), which has been
approved by the Information Standards Board for Health and Social Care. The
standard was published on 20
th
March 2012 and specifies a core record content to
support end of life care coordination systems, which facilitates the consistent
recording of information by health and social care agencies. Reporting functions in
the systems, where integrated, allows them to see, for example, how many people
expressed a preference for a place of care, how many achieved it, and, where there
was a difference, why that was the case.
Established EPaCCS are beginning to show these outcomes. While sample sizes
are still small, some sites report achieving Preferred Place of Death for 70% to 80%
of those on a register. Deaths in hospital have more than halved for others.
VOICES
This year we have carried out the first ever national VOICES survey of bereaved
people to establish a systematic record of the quality of care experienced by people
in their final three months of life. This followed a successful pilot carried out in
2010/11 in two PCT areas, Isle of Wight and East Berkshire. The Office for National
Statistics (ONS) carried out the survey and undertook the analysis. As well as the
quantitative data from the surveys we received a wealth of freetext responses.
Those are currently being anonymised so that they too can be used for research into
this topic, and are the source of the quotations used at the heads of the Chapters
throughout this report.
The questionnaire was sent out to 48,766 people who had registered a death 4 to 11
months earlier. A total of 22,292 people responded, giving a response rate of 45.7%
which is considered excellent for a survey of this type.
Overall quality of care in the last three months of life was rated as outstanding or
excellent by 43% of respondents, good by 33%, fair by 14% and poor by 10%.
There was significant variation according to the setting for care at death. Where the
death occurred in a hospice, 59% rated care “outstanding/excellent”, home 54%,
care home 51% and hospital 33%. Cancer patients and people aged under 65 were
most likely to receive outstanding/excellent care.
There was also significant variation in the reporting of which staff treated the person
with dignity and respect. This was highest for staff in hospices (87% “all of the time”
for hospice doctors and 80% for hospice nurses); followed by district/community
1
End of Life Care Co-ordination: core content.http://www.endoflifecareforadults.nhs.uk/strategy/strategy/coordination-of-care/end-
of-life-care-information-standard
End of Life Care Strategy: Fourth Annual Report
23
nurses (79%); GPs (72%); care home staff (61%); hospital doctors (57%) and
hospital nurses (48%).
The size of the sample determines how detailed the analysis can be.
Geographically, they can be examined down to PCT cluster level. By condition, the
analysis has split responses between cancer, CVD and other but we have been able
to look at additional detail where the numbers have permitted. For example, around
one fifth of patients had dementia or senility mentioned on their death certificate.
This means that we can say that respondents for patients where dementia was
mentioned were more likely to rate the overall quality of care as outstanding or
excellent (46%) compared with those without (42%). This is especially interesting
when compared to the overall rating for care in care homes, since more than half of
deaths in care homes had dementia mentioned (56%).
ONS will be running the second VOICES survey along the same lines as the first
one. We shall be able to combine the two sets of data to look at the results for
smaller areas, which should allow for analysis to CCG level. VOICES is also the
basis for an Indicator in Domain 4 of the NHS Outcomes Framework. This will focus
on improving the experience of care for people at the end of their lives and will be
based on the overarching question in the survey on quality of care in the last three
months, supplemented by the summary questions for care in the different settings:
Overarching question:
- Overall, and taking all services into account, how would you rate his care in
the last three months of life?
The supplementary questions cover:
- Overall perception of the care s/he got [at home] from the GP in the last three
months of his life
- Overall perception of the care that s/he got from the staff in the hospice
- Overall perception of the care that s/he got from the care home in the last
three months of his life
- Overall perception of the care that s/he got from the staff in the hospital on
that [last] admission (responding for both doctors and nurses)
The findings at PCT cluster level show significant variations which are already
prompting local services to ask what lies behind their results so far.
End of Life Care Strategy: Fourth Annual Report
24
National Bereavement Survey, 2011
Table 29: Summary table of benchmark ratings for PCT Clusters across 11 key
questions
NORTHEAST A1 A2 A3 A4 A5 A6 A7 A8 A9 A10 A11
DurhamandDarlington
NorthofTyne
SouthofTyneandWear
Tees
NORTHWEST
Cheshire,WarringtonandWirral
Cumbria
GreaterManchester
Merseyside
Pan-Lancashire
YORKSHIRE&THEHUMBER
BradfordandAiredale
Humber
Leeds
NorthYorkshire&York
SouthYorkshire
WestYorkshire
EASTMIDLANDS
Derbyshire
Leicestershire
Lincolnshire
MiltonKeynesandNorthamptonshire
Nottingham
WESTMIDLANDS
Arden
Birmingham
BlackCountry
Staffordshire
WestMercia
EASTOFENGLAND
BedfordshireandLuton
CambridgeshireandPeterborough
Hertfordshire
Norfolk,GreatYarmouthandWaveney
NorthEssex
SouthEssex
Suffolk
LONDON
InnerNorthEastLondon
NorthCentralLondon
NorthWestLondon
OuterNorthEastLondon
SouthEastLondon
SouthWestLondon
SOUTHEASTCOAST
KentandMedway
Surrey
Sussex
SOUTHCENTRAL
Berkshire
BuckinghamshireandOxfordshire
Southampton,Hants,IsleofWight&Portsmouth
SOUTHWEST
Bath&NorthEastSomersetandWiltshire
BournemouthandPooleandDorset
Bristol,NorthSomerset&SouthGloucestershire
Devon,TorbayandPlymouth
SwindonandGloucestershire
Somerset
CornwallandIslesofScilly
End of Life Care Strategy: Fourth Annual Report
25
A1.OverallqualityofcareacrossallservicesbyPCTClusters A6.Painmanagementinthelasttwodays
A2.Co-ordinationofcarewhilepatientwasat
home
A7.Patientinvolvedindecisionsre:careasmuchas
wanted
A3.Co-ordinationofcare:hospitalwithGP/communityservices A8.Patientexpressedpreferencewherewouldliketodie
A4.Dignity&Respectshownbydoctorsallofthetimelast2
days
A9.Respondentconsideredpatientdiedintherightplace
A5.Dignity&Respectshownbynursesallofthetimelast2days A10.Supportforcarerswhilepatientathome
A11.SupportforcarersabletodiscussworrieswithGP
The freetext adds greatly to the richness of the quantitative data. A high proportion
of responses included substantial additional comments. These were spread across
both positives and negatives: where someone highlighted poor care, it was
frequently in contrast to good care received in another setting or from other staff.
The longest single response, which included copies of letters and press cuttings, ran
to 51 pages and was about an excellent experience of care.
The full report on the findings, published in July, is available athttp://www.dh.gov.uk/health/2012/07/voices/
Equality Issues
The End of Life Care Strategy recognises that inequalities often exist in the care that
different groups of people receive at the end of life. Whilst these inequalities have
been most marked between cancer and non-cancer diagnoses, other groups, such
as older people, people with disabilities and people from different cultural and
religious groups, often face issues of inequality.
A comprehensive Equality Impact Assessment (EqIA) was published alongside the
Strategy in 2008. This recognised the need to address a range of equality and
diversity concerns and set out a series of action points.
Every year we publish alongside the Strategy’s Annual Report a progress report
against the action points set out in the 2008 EqIA. These progress reports should be
read as a continuing narrative of developments and progress made since 2008. The
reports show that much has been achieved but also show that there is more still to
be done.
Key progress since the 2011 Annual Report includes:
• The NEoLCP has produced Planning your future care: a guide in six
languages: Arabic, Punjabi, Urdu, Polish, Bengali, Chinese;
• The NEoLCP has produced The route to success in end of life care -
achieving quality for lesbian, gay, bisexual and transgender people;
• The National End of Life Care Intelligence Network has produced local PCT
and LA profiles, which include over 40 indicators relating to population,
deaths, place of death and cause of death and provide vital data for
commissioners of services; and,
• The National Institute for Health and Clinical Excellence (NICE) Quality
Standard for end of life care for adults stresses the importance of ensuring
that treatment and care, and the information given about it, should be
End of Life Care Strategy: Fourth Annual Report
26
culturally appropriate and accessible to people with additional needs such as
physical, cognitive, sensory or learning disabilities.
The full progress report for 2012 is published alongside this Annual Report on t he
Department’s website.
St Nicholas Hospice Care – The Stephen Project - Improving End of Life Care
for homeless people in a rural county and beyond.
Introduction: This Burdett Trust funded initiative explored the local and national
provision of end of life care for the homeless. On average a homeless person dies
30 years before someone who has a home; the death arises from social situations
rather than the most common life shortening diseases. 6.9% of the local population
are statutorily homeless (and rising) but there is no indication that 6.9% of hospice
care supports homeless people. St Mungo’s and Marie Curie Cancer Care have
considered urban homelessness; we sought to explore the impact of rural
homelessness.
Method: We consulted and continue to work with homelessness services and their
clients, including those in conurbations, faith based, the Big Issue, night shelters,
residential units and young people supported housing units, building bridges with
clinicians involved in the care of homeless people with mental health and addiction
problems, and those with learning disabilities.
Project findings: One of the significant causes of persistent homelessness is often
unaddressed grief arising from multiple traumatic losses and deaths.
Why, where and how homeless people die was a revelation. We supported an
organization who knew their client would only accept death on a park bench; the skill
lies in adapting the principles of a good death to his preferred place of death. The
national initiative to promote ‘admission avoidance’ at point of dying is unachievable
for someone who is or chooses to be homeless; a challenge to clinicians and
commissioners of services!
Social care staff within homeless services are extraordinarily eager to learn more
about bereavement and end of life care in order to support their clients. Our work
has resulted in local services being linked into our education sessions and thereby
promoting our hospice as ‘open’ to care and support on homeless peoples terms
whenever possible.
Recommendations: Albeit findings to date are anecdotal and not statistically
determined, nevertheless ideas are tangible. In offering bereavement support to
vulnerable young people outwith ‘traditional hospice care’ homelessness and self-
destructive behaviours might be reduced. Hospice has a role to ‘work with’ other
agencies to meet grief and ‘death’ issues in a new way.
The challenge is to deconstruct the current diagnosis/illness led hospice-care model,
to compassionate, community, health promotion addressing the social experience of
death in its various forms.
End of Life Care Strategy: Fourth Annual Report
27
Hospices have always filled ‘gaps’. This project has highlighted how contemporary
models of end of life care need revision in order to support homeless people and the
agencies which strive to support them. It is further work for hospices nationally to
provide services equitably, to identify marginalized groups and ‘hidden’ need.
Jane Carpenter, Senior Registered Nurse,
Jackie Saunders, Clinical Services Director
St Nicholas Hospice Care, Suffolk
Housing
The NEoLCP has a history of partnership working to take forward end of life care in a
range of settings. Most recently they have worked with the Housing Learning and
Improvement Network (Housing LIN) to produce a resource pack for extra care
housing staff.
End of life care in extra care housing: a learning resource pack provides practical
information and advice for managers and support staff working in extra care housing
schemes. It covers a range of issues relating to the care of residents with a life-
limiting or progressive condition. The topics range from initial conversations and
care planning through to the things staff might be expected to do after a death. As
well as case studies and ‘top tips’, the pack includes template local directories of key
contacts.
Research
One of the functions of the National End of Life Care Intelligence Network is to
provide easy access to the latest data, research, analysis and statistics. Its website
acts as a gateway for access to good quality research. Its primary function, to
improve the collection and analysis of information related to the quality, volume and
costs of care provided by the NHS, social services and the third sector, to adults
approaching the end of life, itself is a valuable support to those undertaking research
in this area.
End of Life Care Strategy: Fourth Annual Report
28
Chapter 3: Improving outcomes
for people approaching the end of
life: identification and care
planning
Find Your 1%
AMBER Care Bundle
Advance Care Planning
Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)
Choice
The Prime Minister’s Dementia Challenge
Cancer survivorship
Social care
“ServicesarelackinginthisareaandifIcouldhaveonewish,itwouldbetoimprovethe‘continued
careinthehome’service”.
“Respitecaretolive-inisverydifficulttoobtain.Withthebestwillintheworld,no-onecanbe
expectedtocareforsomeone24/7withoutabreak”.
“Hedidn’tlikegoingtothehospitalandwantedtogetbacktohisflatassoonaspossible”.
“Theresidentialcarehomeprovidedwonderfulcare.Myfather..waslookedafterwithdignityand
love.(Thestaff)managedtohelphimenhancehislifewithinterestsandactivities”.
“Thefasttrackprovisionofequipment,bedandairmattresshappenedwithinhourstoallowMumto
dieinherpreferredplaceofcare”.
“Shemayhavediedinhospitalandthiswasnotwhatshewanted.Somepeoplemightnothavethe
fightinthemtogetthemhome.Healthandsafetycanbeoverthetop.Ijusthopeno-oneelseinthis
situationgoesthroughthiskindofstress”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
The End of Life Care Strategy highlighted the challenges of identifying people who
are approaching the end of life. Unless this can be done it is not possible to plan
with and for these people, to explore their choices and options and to help make
them a reality. This can involve a range of staff in both the NHS and social care.
Hill View Surgery – Gold Standards Framework (GSF)
Hill View Surgery is a small GP practice of around 3000 patients and 1.5 FTE GPs
and is part of the Newark and Sherwood CCG in Nottinghamshire. The surgery
team are committed to improving end of life care services for their patients and have
put in place a number of initiatives to ensure that communication about a patient who
is near the end of life is shared across the whole team involved in their care.
They hold GSF meetings every three months which include all the GP practice staff,
District Nurses, Macmillan Nurses and any other staff needing to be involved. They
End of Life Care Strategy: Fourth Annual Report
29
have a check list to help them update records and identify patients’ needs as well as
looking at needs of the carers who are not necessarily resident with the patient.
When someone has passed away the team look at how they managed the care and
reflect on any improvements that could be made for the future. Bereavement
counselling is also something that is offered and if someone has a complaint around
the care either before or after the death then they are invited in to discuss the issues,
although sometimes it is just a reaction to the death and an inability to cope rather
than a failure in the system.
Regular handover meetings are also held with the full team to enable smooth
transition of care during staff changeovers. One of the GPs has recently undertaken
a Diploma in Palliative Care to address a shortfall in knowledge on anticipatory
medicines and syringe driver medications within the practice. All staff including
administration and reception staff are aware of Liverpool Care Pathway and how to
manage conversations around the associated care and outcomes.
Only one death has not occurred in the patient’s preferred place since adopting GSF
and this was mainly due to it occurring during an out of hours episode with the family
panicking as the end stage was developing very quickly. The practice is also
undertaking work to help their dementia patients make decisions on their wishes and
preferences whilst they are still capable and also ensure that the family is aware of
the decisions and wishes expressed. The practice is currently using SystmOne and
Summary Care Records but will start to use the end of life care template recently
received.
The surgery team are very proud of their achievements and the end of life care they
are able to give to their patients and carers.
Mandy Brown – Surgery Manager
Find Your 1%
The ‘Find your 1%’ mobilisation campaign, led by the National End of Life Care
Programme (NEoLCP), has been actively engaging with clinicians in collaboration
with Dying Matters, Doctors.Net.UK, the Royal College of General Practitioners and
other key partners to encourage clinicians to commit to identifying the 1% of people
on their list who might be in their last year of life, to work with those individuals to
plan their care, and to encourage colleagues to do the same.
The campaign has seen over 2900 clinicians sign up so far and a post campaign
survey conducted with 600 GPs who engaged with the campaign showed the
following improvements –
End of Life Care Strategy: Fourth Annual Report
30
End of
March
2011
End of
March
2012
Number of GPs with an EOLC register
221 333
Number of patients on an EOLC register (excluding
outliers)
4,242 7,723
Patients with primary diagnoses other than cancer on
EOLC register (Excluding outliers)
959 2,534
Number of patients with Advance Care Planning
1,652 3,531
Number of GPs across their practices said to have
increased EOLC activity
1,905
Overall among GPs who have interacted with the Find your 1% campaign:
• Two in five have increased the number of patients listed on their end of life care
(EoLC) register;
• Although cancer patients remain the largest group on EoLC registers, the number of
patients with other primary diagnoses has increased (up from 29% in 2011 to 39% at
the end of March 2012);
• The percentage of patients achieving preferred place of care or preferred place of
death has increased, as have the number of patients with advance care plans;
• 19% of those interviewed indicated that their practice had at least one patient on an
EoLC register in March 2012 where there had been none in March 2012;
• 20% had increased the number of patients on their pre-existing EoLC register.
Campaign activity is now focusing on supporting and facilitating local calls to actions
with active participation already underway in London, South Central, South of
England and the North West.
For more information seehttp://www.dyingmatters.org/gp
NHS Midlands & East – East of England End of Life Care GP Practice
Education Programme
To meet the requirements of the Strategic Vision ‘Towards the Best Together (2008)’
requires a step change in the ability of staff to deliver palliative and end of life care.
About 70% of people in the East of England express a wish to die in a place of their
choice. The East of England End of Life Care GP Practice Education Programme
aims to facilitate this by enabling GP practice staff (clinical and non clinical staff) to
have more confidence and skills through end of life education and resources. The
project will run over two years (ending in 2014) and is facilitated by the Mount
Vernon, Anglia and Essex Cancer Networks.
End of Life Care Strategy: Fourth Annual Report
31
During this time all GP practices (including Out of Hours services) across the East of
England will be invited to identify and discuss their end of life care training
requirements with objectives to:
• provide facilitation to enable staff to improve their skills, behaviours and
knowledge with respect to caring for people who require palliative and end of life
care;
• improve communication between GP practices, care homes and other end of life
care providers;
• decrease the numbers of people/residents being admitted inappropriately from
their homes/care homes to the acute hospital services;
• increase the accuracy and quality of the GPs’ end of life register.
With the support of experienced facilitators, practice staff will have opportunity to
discuss and review their current end of life care provision. This will help identify
gaps in care and systems, highlight skills required and negotiate/access appropriate
education and learning opportunities. Training will be varied and flexible to meet the
needs of clinicians and practice staff and will contribute towards continuous
professional development evidence of learning.
The GP facilitator will then endeavour to support the Practice in embedding their
enhanced skills and confidence to deliver an optimal service, through advanced
communication, enhanced knowledge and excellence in clinical skills, for the benefit
of all patients affected by end of life care issues.
Vanessa Convey, Palliative and End of Life Care Education & Training Programme
Manager, East of England Multi-Professional Deanery
[email protected]
AMBER Care Bundle
The AMBER Care Bundle was developed at Guy’s and St Thomas’ Hospital to
support teams in identifying and responding to someone’s end of life care needs
when their recovery is uncertain. It is designed to enable treatment to occur
alongside palliative care.
The tool incorporates and is supported by a package of interventions which includes
staff training and development required to embed the tool in daily ward and
operational practice.
The AMBER acronym stands for:
• Assessment
• Management
• Best practice
• Engagement of individuals and carers
• For people whose Recovery is uncertain
End of Life Care Strategy: Fourth Annual Report
32
Emerging evidence suggests that using the AMBER care bundle improves decision-
making. It also has a positive impact on multi-professional team communication and
working and increases nurses’ confidence about when to approach medical
colleagues to discuss treatment plans. In addition people are treated with greater
dignity and respect and there is greater clarity around preferences and how they can
be achieved.
Guy’s and St Thomas’ Foundation Trust
Guy’s and St Thomas’ Foundation Trust (GSTT) has been implementing the AMBER
care bundle in around half of its wards since last August.
During this time over 600 patients have been identified as being at risk of dying in
the next one to two months or facing an uncertain recovery and have gone through
the AMBER process. Of patients cared for using the AMBER care bundle in 2011,
55% were discharged home to die while the rest stayed in hospital, often because
they chose to rather than because they were too ill to transfer. Latest available
figures suggest 70% of those who died achieved their preferred place of death.
While the majority of those dying in hospital died within a fortnight of being placed on
AMBER, most of those who returned home died within 100 days.
A possible indication of the wider effect of the AMBER care bundle is a reduction in
the overall hospital death rate. This may be linked to increased numbers of patients
being fast-tracked home to allow them to die there if this is their wish.
Teamwork has improved on the wards that use the care bundle.
There are plans to roll the tool out to most of the hospital’s remaining wards. It is
also planned to increase its use at neighbouring King’s College Hospital as well as
piloting it in surrounding community areas.
The AMBER care bundle has been identified as a key enabler in the Transform
Programme for acute hospitals. The team at Guy’s & St Thomas’ is working with
trusts across the country to support implementation.
More information on the AMBER Care Bundle can be found on the GSTT website.
../../dhuserdfs/nw020/TIng/Data/notes99D109/www.guysandstthomas.nhs.uk/service
s/ambercare/amber-carebundle.aspx
Advance Care Planning (ACP)
Advance care planning is a voluntary process of discussion and review with the aim
of helping someone who has the capacity to indicate what their preferences and
wishes are for future care.
If the individual wishes, they can record choices about their care and treatment and
an advance decision to refuse a treatment in specific circumstances. These choices
End of Life Care Strategy: Fourth Annual Report
33
can then be referred to by those responsible for care and treatment if, as the illness
progresses, the individual loses capacity to make decisions for themselves.
Advance care planning involves a series of conversations in which a person’s wishes
are explored, identified and then recorded. Policies should be agreed locally about
where care planning documentation should be kept, including any formalised
outcomes. There should also be systems in place to enable health and social care
professionals – including out of hours providers and ambulance services - involved
with the individual to share information.
Advance Care Planning and the Information Sharing Process in Knowsley
Advance care planning (ACP) in Knowsley uses the Preferred Place for Care (PPC),
a patient-held document. To be effective the information contained in the PPC
needs to be shared with all the staff who are involved in the patient’s care. A
Notification document was developed to ensure that this process takes place as
efficiently as possible. Patients are made aware of the importance of the Notification
Form to support the PPC document to help them to achieve their wishes and
preferences for the care at the end of their lives.
A project was set up to take this forward, with three aims:
• to support staff to start the conversation about end of life choices with patients
and record these in the PPC document;
• to set up a system that would share the information contained in the PPC with
relevant professionals, to ensure choices were respected; and,
• to use the information anonymously to audit the reasons why some patients do
not die in their place of choice.
Letters were sent to every GP Practice informing them of the project and what to do
with the information supplied on the Notification Form. GP Out Of Hours (OOHs)
and North West Ambulance Service (NWAS) agreed to input onto their IT systems
and use the information. Two open days were held for acute and community staff; a
total of 88 staff attended.
More than 200 staff across all sectors attended intensive training sessions on
‘starting the conversation’, the PPC document and the Notification Form, a further 34
attending communication skills training. Information from the Notification Forms was
anonymously collected onto a database, as well as being shared with appropriate
urgent care services and primary health care teams identified on the form, e.g. GP’s,
District Nurses, Community Matrons, Specialist Nursing Teams, Community
Macmillan Nurses, hospice and social care, including OOHs and NWAS. It enables
staff to plan ahead; if they are aware of patients’ preferences they can put systems in
place to support them to achieve their wishes.
This has continued to snowball, with more staff continuing to recognize the value and
importance of ACP. 400 have been completed and the success rate is amazing to
see, with 87.1% of people achieving their PPC.
End of Life Care Strategy: Fourth Annual Report
34
Another huge achievement is the number of patients now involved in ACP who had
life limiting conditions other than cancer. 73% of all the notifications received are
non-cancer, although traditionally these patients do not always receive the same
consideration in achieving their preferences for end of life care as people with cancer
do.
[email protected]
There is now a range of useful ACP support tools available to both health and social
care professionals, including:
• Holistic common assessment of supportive and palliative care needs for
adults requiring end of life care
• Capacity, care planning and advance care planning in life-limiting illness: a
guide for health and social care staff
• Planning for your future care
• Preferred priorities for care documentation
• The differences between general care planning and decisions made in
advance
• Concise Guidance to Good Practice: Advance Care Planning (RCP, 2009).
• Thinking and planning ahead: learning from others
• e-ELCA End of Life Care for All e-learning, which includes modules on ACP
• It All ADSE Up (Ask, Document, Sharing, Evaluating plan) was launched at
the conference In the End Care Counts on 16 October 2012.
Blackpool Teaching Hospitals Foundation Trust
In recent months Blackpool Teaching Hospitals Foundation Trust, one of the
participants in the Transform programme, has been running special half-day training
sessions for its staff on communications as part of its plan to introduce advance care
planning (ACP) for all patients approaching the end of life.
The trust’s end of life care team found that one of the main stumbling blocks to ACP
was staff’s apprehension about entering into what they saw as difficult
conversations.
As a result the trust identified funding to train a cohort of six facilitators who are now
starting a rolling programme of three-hour sessions on communications skills which
will be made available to all staff within the organisation. So far 30 staff a month are
going through the training but it is hoped shortly to expand the number of facilitators
and therefore double the numbers receiving the training each month.
The initiative is part of a wider end of life care strategy across the entire health
economy aimed at ensuring that people are cared for and die where they wish. The
next stage of this process will be the gradual introduction of the Preferred Place for
Care within selected wards as well as making use of the AMBER care bundle.
The current policy began in 2009 when the trust carried out an audit of deaths within
its hospitals. It found that of 60 deaths, 45 had been expected where the patient
expressed a wish to return home but for one reason or another had been unable to.
End of Life Care Strategy: Fourth Annual Report
35
A number of changes have been made to improve the rapid discharge pathway,
including making use of a private ambulance that can be ready within a couple of
hours, taking a more flexible approach to equipment and ensuring that prescriptions
are available within half an hour.
The hospitals are now discharging around 20 patients per month within 24 hours and
one or two a week within four hours. The numbers appear to be growing.
The end of life care team is also working closely with other parts of primary and
secondary care as well as local hospices to ensure that all aspects of care are co-
ordinated and that, for instance, people aren’t admitted to hospital unnecessarily in
the first place.
Although it is difficult to find hard measures of progress in such a complex field, the
response of patients and families to the new policy has been very positive. In one
example, a patient who was being discharged home said her dying wish was to see
the sea one last time. “So the ambulance took her home but on the way they pulled
up at the promenade and the lady was able to sit looking at the sea for 30 minutes
before going home.”
DNACPR
SHAs have worked hard to develop Do Not Attempt Cardiopulmonary Resuscitation
(DNACPR) policies which can be used consistently across their areas.
Deciding right
Deciding right is England’s first integrated policy on making care decisions in
advance and covers three key national frameworks: the 2005 Mental Capacity Act;
the 2007 BMA/RC/RCN joint statement on cardiopulmonary resuscitation decisions;
and the 2011 NHS guidance on advance care planning. Its key components are
C hoice and capacity The right of individuals to choose their care preferences,
either now should they lose capacity in the future, or have the right choices made on
their behalf if they do not have capacity
A greement The right choice comes from shared decision making which is a
partnership between two experts, the individual and the professional
R ight documents Having the same documents in every care setting ensures that
decisions are centred on the individual, not the organisation
E ducation The right for patients and professionals to have the resources to
understand and use Deciding right.
Developed by a team led by Dr Claud Regnard for NHS North East and championed
by the end of life Clinical Innovation Team, Deciding right includes provision for
shared, region-wide documents so that a patient’s decision, once made, is respected
wherever they receive care, and the process of evolving decision-making (including
changing one’s mind) is respected. Documents include:
. a Regional Advance Decision to Refuse Treatment (ADRT)
End of Life Care Strategy: Fourth Annual Report
36
. a Regional Do Not Attempt CPR order (DNACPR)
. a Regional Emergency Health Care Plan
These and other resources are available on www.theclinicalnetwork.org (click on
Deciding right signpost at the foot of the homepage).
Deciding right so far
Deciding right is being widely disseminated to all health and social care
organisations in the north east and has been adopted by all NHS trusts. Most trusts
have already started implementing the initiative and some have already made the
switch to the new regional DNACPR form. Deciding right is included in the palliative
care register information pack that has gone to all GPs. The North East Ambulance
service has been part of the development process and by April 2013 they will only
accept the new regional forms.
Elizabeth Kendrick, GPwSI Older people and Chair End of Life Clinical Innovation
Team NHS North East
Claud Regnard, consultant in palliative care medicine, St. Oswald’s Hospice,
Newcastle upon Tyne
In response to continuing demand for clarification in this extremely sensitive area the
NEoLCP has supported Professor Rob George, clinical end of life care lead for
London and a palliative care specialist, to develop a web-based resource for
DNACPR. This was published on 27 September.
Leeds Health and Social Care implementation of regional DNACPR form
The health and social care economy in Leeds began implementation of the newly
developed regional DNACPR form in August 2011 as part of the wider project to
implement across the whole of the Yorkshire and Humber region.
The project was supported by the NHS Yorkshire and Humber Strategic Health
Authority, the overall aim being to establish a common DNACPR form that would
facilitate the documentation and communication of DNACPR decisions across all
care settings on transfer between them.
As the biggest city within the Yorkshire and Humber region with a population close to
800,000 and housing two of the largest teaching hospitals in Europe, Leeds were
aware of the challenge ahead to implement the form.
A local, high level Leeds DNACPR Task & Finish Group was established to plan and
oversee the introduction, implementation and embedding of the form. The Leeds
health and social care economy, which crucially ensured senior representation from
the acute, community, mental health and commissioning trusts, the two hospices,
adult social care and Yorkshire Ambulance Service, worked collaboratively. Citywide
collaborative working has been key to the success of implementation.
The group developed and adhered to a communication and education plan and as a
result, implementation has been relatively smooth with some excellent examples of
End of Life Care Strategy: Fourth Annual Report
37
the impact in practice, not least a Senior Sister within A&E at one of the acute
hospitals reporting increasing numbers of patients arriving in A&E with the form.
Post implementation audits have broadly demonstrated increasing improvement in
the completion on the forms but underlined the need for ongoing education and
training particularly for medical staff and specifically around communication skills.
Finally, a READ code has been agreed with SystmOne for the DNACPR form which,
as the form is recognised by all involved, has improved communication between
healthcare professionals across organisations regarding a patients’ DNACPR status.
There may not have been a similar impact before the existence of a 'universally'
accepted form. The form has also been added to the Electronic Palliative Care
Coordination System (EPaCCS) which is currently being rolled out in Leeds which
will further improve electronic communication across organisations.
[email protected]
Choice
The initiatives described in this report will enable people to formulate and
communicate their choices for care at the end of life. In May the Department of
Health published Liberating the NHS: No decision about me, without me - Further
consultation on proposals to secure shared decision-making. This reiterated the
Department’s commitment to introducing a right to choose to die at home, including a
care home, when services are well enough developed to allow that to be a realistic
offer. The document also reiterated the plans to run an evaluation of progress in
2013 to determine how soon this might be deliverable.
Dementia – the Prime Minister’s Dementia Challenge
While the principles set out in the End of Life Care Strategy apply to all adults
approaching the end of life, the detail of how and what care is provided will vary
depending on someone’s condition. We have reported in previous years on the work
done focussed on kidney care, which itself has provided a model for heart failure.
With an ageing population dementia is a particular and growing challenge for end of
life care. In March the Prime Minister launched his Dementia Challenge, which
includes end of life care. The NEoLCP is one of the key stakeholders which is now
engaging with these issues.
Merseyside & Cheshire Palliative & End of Life Care Network (MCPEoLCN) -
Dementia Roadshows
MCPEoLCN scoped the needs of people diagnosed with dementia in relation to
support for planning for their future care. There was very little activity from health
professionals in offering an opportunity to people with dementia with mental capacity
to plan for their future care. The planning process mainly occurred when the person
had lost mental capacity.
End of Life Care Strategy: Fourth Annual Report
38
In dementia, this needs to take place early, while someone has sufficient mental
capacity and where decisions and preferences can be recorded consistent with the
principles set out in the Mental Capacity Act. GPs are crucial for people with
dementia, both for obtaining a diagnosis and accessing ongoing support and care.
Three roadshows across the network were delivered in April and May 2012. The
roadshows covered five localities. They were delivered to 150 health professionals,
91 of whom were GPs. They aimed to increase awareness of the role of health
professionals (especially GPs) to support people diagnosed with dementia who still
have capacity to plan for their future care. This would include offering an advance
care planning discussion.
It was also important to increase the health professionals’ knowledge in identifying
end of life in dementia patients and potentially reducing burdensome interventions.
Speakers included a community geriatrician active in the ACP process in care
homes, two Consultants in Palliative Medicine, Alzheimers Society, End of Life Care
(EoLC) Facilitators and a carer. The roadshow content included the use of the EoLC
tools, identification of the end of life in dementia using prognostic indicators,
evidence based research on what would be a burdensome intervention for a person
with dementia and how to reduce avoidable hospital admissions. Ethical
considerations were also discussed i.e. nutrition and hydration.
The EoLC Facilitators were crucial in giving the local overview of services and
information especially around the EoLC tools. Delegates had a resource pack which
included NEoLCP resources.
Evaluations consisted of a questionnaire pre and post event on knowledge, skills and
confidence and the delegates will be followed up at three and six month intervals to
capture outcomes from the roadshows and identify any further training needs.
Evaluations showed an overall increase in knowledge, skills and confidence of
participants in having discussions and using the ACP process, identifying end of life
in dementia patients, also reducing burdensome interventions and the use of the
Liverpool Care Pathway. Feedback was extremely positive. As a result of the
roadshows there is evidence ACP has taken place for a number of patients with
dementia already and there have been enquiries looking for more dementia events.
Contact: caroline.flynn@mccn.
Improving the End of Life Care experience of People with Dementia
For the past two years the NHS South of England Central Clinical Leaders Network
has focused on increasing awareness of the end of life care (EoLC) needs of people
with dementia and their carers. The campaign has had a big impact – but there is
still a long way to go.
The network decided to focus on dementia because we were well aware of gaps in
the provision of palliative and EoLC as well as in support for patients with dementia
End of Life Care Strategy: Fourth Annual Report
39
and their carers. We also recognised that the number of people developing
dementia was growing as was the cost of caring for them.
We set out two principal aims: to create a robust and clear dementia pathway and to
ensure mass awareness and engagement so that EoLC for people with dementia
can be improved.
Initially this involved seeing how many people with dementia were on EoLC locality
registers. Numbers were very low so a robust campaign to raise general awareness
about dementia began. Educational sessions took place in the community to help
case managers improve their understanding of dementia as well as their ability to
support patients and relatives.
Memory clinics were visited to link with colleagues working in mental health to
promote the inclusion of patients with dementia on end of life registers. The EoLC
practice educators also actively promoted identification of people nearing the end of
life and end of life registers, both within GP surgeries and across nursing homes. To
ensure dementia and EoLC are linked strategically EoLC groups routinely discuss
dementia at EoLC meetings.
The results have been dramatic. Numbers of people with dementia and who are
offered an advance care plan have increased and EoLC is now a recognised part of
dementia services, something that will be further strengthened by EoLC’s inclusion in
the Prime Minister’s Dementia Challenge.
Liz Clements, Inpatient Manager, Prospect Hospice,
[email protected]
Cancer
Much of the basis for the End of Life Care Strategy came from work with cancer.
The challenge has been to bring the quality of care for other conditions closer to the
standard which has been available for cancer. However this does not mean that
cancer can safely be ignored. Indeed, the improvements in cancer care mean that
there are now increasing numbers of cancer survivors who present particular end of
life care challenges. The Cancer Survivorship initiative includes a workstream on
Active and Advanced Disease which is making the connections with end of life care.
Social Care
The NEoLCP’s report What we know now that we didn’t know a year ago: New
intelligence on end of life care in England (National End of Life Care Intelligence
Network (NEoLCIN) May 2012) includes the fact that 29% of people with an
Electronic Palliative Care Co-ordination System record (EPaCCS) identified that they
would prefer to die within the care home setting.
We know that in 2008-2010 16% of people living in care homes were admitted to
hospital within their last week of life and died there (NEoLCIN 2012).
End of Life Care Strategy: Fourth Annual Report
40
In order to meet the changes in demographics and ensure that the preferences and
wishes of individuals are met at the end of life including preferred place of care and
death, the NEoLCP has been supporting care homes at national, strategic and local
levels. The Route to success in end of life care: Achieving quality in care homes was
published in 2010. The guide follows the six steps of the pathway set out in the End
of Life Care Strategy. Along with this guide, other resources were published
including a quality assessment tool and a training package developed within the
North West of England Six Steps to Success programme for care homes
(http://www.endoflifecareforadults.nhs.uk/care-settings/carehomes/route-to-success-
in-care-homes-package )
Following the development and publication of the Six Steps training programme the
North West have employed facilitators to roll out and implement this within 800 plus
care homes. The Six Steps is also being implemented by end of life care
facilitators/educators within care homes nationally, including in Kent, Norfolk and
Plymouth. St Luke’s Hospice in Plymouth is implementing an adapted version of the
programme which covers over 50% of their care homes as well as ten domiciliary
care agencies.
The Six Steps to Success End of Life Care Home Programme
The Six Steps to Success End of Life Care Home Programme, developed in the
North West, was launched nationally in January 2010.
The programme has now reached approximately 400 care homes across the North
West. It has been delivered by end of life care facilitators and hospice staff to
support care homes to put into practice the information from the ‘Routes to Success
in end of life care – achieving quality in care homes’ (NEoLCP 2010).
To support the delivery of the programme the three North West Networks (Greater
Manchester and Cheshire Cancer Network, Cumbria and Lancashire End of Life
Network and Cheshire and Merseyside Palliative and End of Life Care Network)
have made all the supporting materials to deliver the workshops freely available at:
www.endoflifecumbriaandlancashire.org.uk/six_steps.php
The programme continues to evolve. Recent features being added to the webpage
include electronic audit tools and updated material. A facilitators’ online forum was
launched in October 2011 enabling facilitators from across the country to share ideas
and presentations and to support each other.
www.endoflifecumbriaandlancashire.org.uk/facilitators.php
Many care homes have now completed or are approaching the end of the
programme and are reporting positively on its impact for their residents, families and
staff. A formal evaluation is due to commence across the North West which will
explore the different delivery models, an economic appraisal and an assessment if
its impact.
Work is also underway to develop a Six Steps to Success End of Life Care
Programme for Domiciliary organisations and their care workers.
[email protected]
End of Life Care Strategy: Fourth Annual Report
41
The NEoLCP’s 2012 report Critical success factors that enable individuals to die in
their preferred place identified the development of care homes as one of nine critical
factors in enabling people to do so. The report was based on contributions from
commissioners and providers from seven PCTs. Investment in training for care
home staff was seen as a priority to enable individuals to remain within the home,
reduce unnecessary hospital admissions and ensure rapid discharge back to their
home (based on preference). Other factors included use of nationally recognised
tools or their equivalent, for example Advance Care Planning, Preferred Priorities for
Care, Gold Standards Framework and Liverpool Care Pathway.
Supporting People to Live and Die Well: Phase 2 implementation
The NEoLCP’s Social Care Framework (SCF) – ‘Supporting People to Live and Die
Well’ – was rolled out between July 2010 and March 2011 through regional
roadshows in each of the nine Association of Directors of Adults Social Services
regions (ADASS) and through promotion at health and social care conferences and
events. During this phase eight test-sites were also commissioned which reported in
June 2011 and their results were disseminated at a showcasing event in October
2011. The NEoLCP enjoyed good support in this programme of work from the
Department of Health’s Social Care Directorate’s Deputy Regional Directors and is
keen to identify a joint action plan for Phase 2. A similar process is underway with
ADASS: both partnerships are key to the success of the social care end of life care
initiative to ensure sustainable service improvements in end of life care support and
to embed these as part of the core business of Council’s, local Commissioning
Groups and Health and Well Being boards.
In Phase 2 the programme has identified three core workstreams:
Workstream 1: Embedding the Social Care Framework in front-line practice,
service development and delivery in the regions.
This work is focused on specific initiatives put forward by the regions for NEoLCP
support. The (modest) financial support is treated as pump-priming only, the
intention being that these are not time-limited interventions but should become
embedded in ongoing practice. The projects currently supported are
1. A Community Response to End of Life Care (Nigel Walker - Creative
Commissioning)
2. Supporting Integrated Working Between Social Care and Primary Health Care
(Yorkshire and Humberside Social Care End of Life Care Strategic Leads
Group)
• Hull workstream - Raising Primary Care professionals’ awareness of the
role of social care in end of life care.
• Wakefield workstream – Support the effective contribution of domiciliary
care workers to end of life care in multi disciplinary team meetings.
• York workstream – Support the effective contribution of home care staff in
end of life care pathways of care delivery.
End of Life Care Strategy: Fourth Annual Report
42
3. Developing a Good Death Charter for People with Dementia and their Carers
(North East Good Death Charter Group/ North East Dementia Alliance)
4. Using Action Learning to Embed End of Life Training in Social Work Teams
(East Lancashire Palliative Care Partnership/Cumbria and Lancashire End of
Life Network/Lancashire County Council)
5. Delivering Integrated End of Life Care Training through joint Social and Health
Care Professional Education (Merseyside and West Cheshire Palliative and
End of Life Care Network)
6. Developing Training from the Prisons Route to Success (Prisons RTS Project
Working Group/Merseyside and Cheshire Palliative and End of Life Care
Network)
7. End of Life within Dementia Care Homes (Derby City Council/Derbyshire
CCG/Making Space)
8. A Joint Social and Health Care Training Needs Analysis and Scoping
Exercise for the Delivery of Integrated End of Life Care (Norfolk County
Council/Norfolk Community Health and Care NHS Trust/NHS Great Yarmouth
and Waveney/NHS County Workforce Group/Anglia Cancer Network).
9. An approach to localised involvement and development in support of people
at End of Life - including family carers and people living and dying with
dementia (South of England Health and Social Care Partnership)
10. End-of-life intervention skills: consultation and education for Bromley social
care staff (St Christopher’s Hospice/London Borough of Bromley).
In addition to these specific initiatives, work is ongoing to develop networks of end of
life care leads in local Councils and end of life care champions across social care.
Workstream 2: Maintaining and developing strategic partnerships, innovation
and service implementation in the social care world
• ADASS: The ADASS executive group have endorsed an advisory audit
and RAG rating system for end of life care which will more systematically
assess progress on the delivering of the end of life care social care
framework in local areas and will be used to disseminate, promote and
network best practice. The advisory framework will provide a focus on
o awareness raising through Council, Public Health and Voluntary
and Community Faith sector networks in end of life care
o identifying robust joint commissioning of end of life care
o integrated service delivery models across health and social care
o contract and service specifications covering end of life care
standards
End of Life Care Strategy: Fourth Annual Report
43
o networks between specialist palliative care and generic social care
teams, end of life care needs into core assessment, support
planning and personalised systems
o early identification for end of life care needs and best use of the
Mental Capacity Act
o workforce and devolvement initiatives supporting end of life care
across the social care sector; and
o promoting culture change in Councils in relation to end of life care.
This will complement ADASS guidance supporting the implementation of the
Care and Support White Paper and related project work on the Palliative Care
Funding pilots.
• National Institute of Health Research School for Social Care Research: end of
life care remains a key research question for them. The London School of
Economics is to undertake modelling and economic evaluations of selected
Phase 2 interventions in Yorkshire and Humberside and London.
• College of Social Work: co-badged a ‘Route to Success’ (RTS) guide for
achieving best quality practice in social work when supporting people with end
of life care needs. The guide was developed by a stakeholder group and
launched in July 2012. The College of Social Work is also considering
pursuing the possibility of an end of life care community of interest forum for
its members.
• Association of Palliative Care Social Workers (APCSW): coordinating the
development and maintenance of the end of life care champion’s network for
NEoLCP.
• Social Care Institute of Excellence: development of their end of life care
platform and other dissemination activities.
• Skills for Care: they worked closely to support the implementation of the
Social Care Framework in the Phase 1 roadshows and there is continuing
liaison over e-learning and other initiatives.
Workstream 3: Promoting end of life care in social work practice and social
work education.
There are three parts to this workstream
• The Route to Success guides and the College of Social Work community of
interest forum
• Rolling out training and mentoring schemes for qualified social workers from
test-sites and phase 2 projects.
• Securing end of life care modules in social work qualifying programmes.
Though at a comparatively early stage, knowledge and skills around death,
dying and bereavement has been inserted into the amended Professional
Capabilities Framework for social workers. We are also working with the Joint
University Council Social Work Education Committee (which coordinates
policy and developments across higher educational training establishments in
End of Life Care Strategy: Fourth Annual Report
44
social care policy and education) and the College of Social Work on a
proposal to develop a curriculum guide in end of life care to accompany the
Professional Capabilities Framework.
TEST - Training; Engagement; Services; Transferability and Sustainability
As part of the objective to ensure a rigorous approach to best quality practice,
evidence and tools developed from Phase 1 have been mapped across these four
themes to produce a signposting document as a core resource for Phase 2 of
implementing ‘Supporting People to Live and Die Well’. This will be widely
disseminated in hard copy as well as being online. The aim is also to convert the
learning from the ten projects listed above into an interactive resource which can be
more widely used and disseminated.
End of Life Care Strategy: Fourth Annual Report
45
Chapter 4: Improving outcomes
for people approaching the end of
life: coordination and delivery
Electronic Palliative Care Coordination Systems (EPaCCS)
The acute sector - the Transform Programme
Carers Strategy
Hospice capital grants
“TheNHShasnoideawhatwasgoingon.TheGPandHospitalwerestrangers”.
“Ifoundallthevariousagenciesdidnotspeaktoeachother”.
“Iknoweverythingisdowntomoneybutcareathomeneedsthoroughoverhauling”.
“IamsurehewouldhaveappreciatedanoccasionalvisitfromhisGP,thenIthinkhisdoctorwould
haverealisedhowmuchhisconditionhaddeteriorated”.
“Itwasthehospitalandtheresidentialcarehomethatgothimthecarepackagethatwasputinplace”.
“Thenurseconsultantinpalliativecarewasfantasticandonceheagreedtheendoflifepathway
everythingimproved”.
“Inherfinaldays(athome),herGPandstaffwerereallygoodandunderstandingtoMumandus.The
DistrictNursecamedailyforthelastthreedaysandshewasalsoverygood...andwaswithuswhen
Mumpassedaway,whichweappreciatedalot”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
Communication, both between care providers and between professionals and the
public, is a constant refrain in the End of Life Care Strategy. This Chapter focuses
on the work in hand to improve this aspect of quality and productivity.
EPaCCS
Electronic Palliative Care Coordination Systems (EPaCCS) is the term now in use for
the locality end of life care registers described in the End of Life Care Strategy.
Following successful pilots from October 2009 to March 2011, evaluated by Ipsos
MORI,
2
the National End of Life Care Programme (NEoLCP) has led on spreading
uptake across England.
EPaCCS provide a means of recording and communicating key information about
people’s wishes and preferences for end of life care. They aim to improve
coordination of care so that end of life care wishes can be met and more people are
able to die in the place of their choosing and with their preferred care package. As
well as making significant improvements in care quality EPaCCS should also have
2
End of Life Locality Registers Evaluation: Final Report. Ipsos MORI. June 2011. Available:http://www.endoflifecareforadults.nhs.uk/publications/localities-registers-report
End of Life Care Strategy: Fourth Annual Report
46
the potential to generate efficiency savings through reductions in unwanted and
inappropriate interventions and emergency admissions to hospital
3
.
The benefits dependency diagram below, reproduced by kind permission from Karen
Henry, Palliative Care Team Leader Leeds Teaching Hospitals Trust, summarises
where and how EPaCCS is expected to improve the quality and efficiency of
services.
Building on the learning from the pilots, the NEoLCP and the Department developed
a national information standard (End of Life Care Co-ordination: core content
4
),
which has been approved by the Information Standards Board for Health and Social
Care. The standard was published on 20 March 2012 and specifies the core record
content to be held in end of life care coordination systems, facilitating the consistent
recording of information by health and social care agencies and, with the consent of
the individual, supporting safe and effective management and sharing of information.
Implementation Guidance
5
has been published to support commissioners, health
and social care organisations and IT systems suppliers in implementation of the
standard and EPaCCS and to inform local decision making. The standard requires
3
The information strategy for public health, adult social care and for the NHS in England (Dept. of
Health, May 2012)http://informationstrategy.dh.gov.uk/category/case-studies, , /,http://informationstrategy.dh.gov.uk/epaccs,
orhttp://informationstrategy.dh.gov.uk/end-of-life-care-intelligence-network/
4
End of Life Care Co-ordination: core content.http://www.endoflifecareforadults.nhs.uk/strategy/strategy/coordination-of-care/end-
of-life-care-information-standard
5
End of Life Care Co-ordination Implementation Guidance. National End of Life Care Programme.
March 2012.http://www.endoflifecareforadults.nhs.uk/publications/implementation-
guidance
End of Life Care Strategy: Fourth Annual Report
47
all IT systems and software supplier contracts for new EPaCCS issued after 20th
March 2012 to specify the requirement for systems to be compliant with the new
standard. Where an EPaCCS is already in place, suppliers must ensure systems
are compliant by 1 December 2013.
The standard allows for local determination and configuration of the electronic record
systems and platforms. Local areas may decide to extend data items beyond the
core requirement depending on their own circumstances. A wide range of different
implementation approaches are currently being adopted, including Advanced Health
and Care (Adastra), SystmOne, McKesson and Summary Care Record (SCR)
reflecting the regional differences in systems and size of the locality being covered.
Other systems such as EMIS Web and the Medical Interoperability Gateway (MIG)
are similarly being considered.
National implementation has also been supported by specialist technical support
from the Department of Health’s Informatics team. In particular, they have been
working on development of Interoperability Toolkit (ITK) interoperability specifications
to enable EPaCCS to be used easily regardless of system supplier. Working in
collaboration with the ITK team, work is underway to define interoperability
specifications that will enable different clinical systems to share data consistently
within stringent clinical governance rules. This will ensure that clinical needs are met
to support co-ordinated care for people with long term conditions and those
approaching the end of life.
The focus this year therefore has been to provide central support to localities
through:
• facilitation of widespread implementation and uptake of EPaCCS;
• assessment of EPaCCS’ impact on improving the quality of end of life care in
supporting delivery of preferred place of care and preferred place of death;
and,
• delivering the information standard and developing national enablers, such as
the interoperability standards, to support data sharing across different clinical
systems.
End of Life Care Strategy: Fourth Annual Report
48
Implementation spread and impacts upon service improvement
What we now know about EPaCCS deployments comes from a range of sources: an
SHA level implementation survey conducted at the start of 2012; a PCT level
implementation survey conducted in July 2012; feedback from three regional
EPaCCS events; and information shared on the dedicated EPaCCS project support
site on NHS Networks, plus regular contact with project leads and key stakeholders.
What has become clear from the data is that there is now a real sense of spread of
EPaCCS implementations nationally.
Locality register pilots (2010-11) Mid 2012 EPaCCS status
update
Blue: Pilot sites, Green: Full implementation, Orange: Partial implementation, Blue: Projects being
planned
Map data © 2012 Basarsoft, GIS Innovatsia, GeoBasis-DE-BKG (©2009), Google, Tele-Atlas 2011 Google [ed note: Please
display attribution within or immediately adjacent to the visual, and ensure it is readable]
CCG geographical data sourced from NHS Commissioning Board
While these maps show the central host for each EPaCCS it does not show their
coverage. EPaCCS vary in size. In the South West, the EPaCCS led from Weston
covers almost the entire SHA region, while London’s Coordinate My Care is city
wide. Other EPaCCS are smaller.
Over the last year the national EPaCCS implementation project team has -
• Facilitated deployment of the information standard in relevant health and social care organisations and
supported appropriate use of the guidance;
• Provided central support to local EPaCCS implementations across localities in England;
• Developed a collaboration space on NHS Networks for sharing of good practice and discussion of key
issues for implementers;
• Provided central technological and informatics support for local delivery of strategic EPaCCS solutions
• Provided a central monitoring function to periodically monitor the progress’, spread and impact of
EPaCCS;
• Reviewed the national information standard as required by the Information Standards Board for Health
and Social Care;
• Provided support and issue resolution to organisations implementing the standard.- evidenced by
website, call handling/query management protocol and risk log/escalation process for clinical safety
issue; and
• Held a number of regional EPaCCS roadshows to showcase best practice.
End of Life Care Strategy: Fourth Annual Report
49
Where EPaCCS is becoming established it is also beginning to show outcomes.
While sample sizes are still small, some sites report achieving Preferred Place of
Death for 70% to 80% of those on a register. Deaths in hospital have more than
halved for others.
When the place of death data is compared for all EPaCCS early adopters (who
provided relevant data) against the English national average baseline data there is
emerging evidence that EPaCCS are helping to support people to achieve choice
and to die in their usual place of residence (if such is their wish).
Salford has built on its own integrated record also called
Co-ordinate My Care. Early data show that actual place of
death, where known, for those added to their system during
2011-12 was 61% care home (residential or nursing), 27%
at home, and 6% in hospital. The high percentage shown
for care homes reflects the fact that in Salford there is a
dedicated Care Homes Practice that has been at the
forefront of identifying, and recording details for, patients in
their last year of life.
In South Essex PCT
of those people who
were on the
EPaCCS register
and stated a
preference 70%
achieved Preferred
Place of Death.
Of those dying whilst
on the register, 18%
died in hospital,
whereas 46% died
at home.
In the South West
their EPaCCS system
now supports 14 PCTs
across the region,
sharing end of life care
preferences with out of
hours services, GPs,
A&E, community
health providers,
social care and
specialist palliative
care. Controlled
access to the record is
via a shared web
In London, where Coordinate My Care (McKesson,
Liquid Logic) is being rolled out as an SHA-wide
EPaCCS, 2198 patients had a record on its EPaCCS
system. Of those that have died on the register, (n= 429)
figures show that 51% died in their usual place of
residence (DiUPR) whilst 24% died in hospital; the
national DiUPR rolling average for the same time period
is 41.7%. The quality of end of life care in London is
undergoing radical change; the EPaCCS is an important
part of that change.
End of Life Care Strategy: Fourth Annual Report
50
Place of death
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
Hospi tal Care home Hospi ce Home Other
Survey respondents (n= 9 orgns)
Engl and average
Note on Engl and average data: Other not
recorded ; hospi tal deaths do not
i ncl ude use of hospi ces wi thi n
hospi tal s.
Source: England average - NEOLCIN end of life care profiles - Place of death 2008-10 -http://www.endoflifecare-
intelligence.org.uk/profiles/pct/atlas.html
Source: EPaCCS mid 2012 survey
Additional EPaCCS benefits are also being reported across early adopter sites
including:
• The ability to co-ordinate care for long term conditions patients who may be
entering their last year of life;
• Provision of a single point of access for key end of life care information about
people that helps support patient choice and avoid unnecessary hospital
admission. This is further enhanced where the EPaCCS is linked to a care
co-ordination system such as that employed in Bedfordshire;
• EPaCCS implementations facilitating wider end of life care service
transformation and education programmes;
• The availability of key data from EPaCCS is supporting QOF reports, as
currently being used within the South West, and is informing future
commissioning plans; and,
• EPaCCS implementations are bringing clinicians, commissioners and IT leads
together to work collaboratively to help deliver a good death; sharing data is
just one of many ways in which this can happen.
End of Life Care Strategy: Fourth Annual Report
51
Next Steps
Building on well established links with partners working on long term conditions
(LTC) we are now working across programmes to integrate and look for shared
solutions. For example, all of the ITK work will support activity across the LTC, end
of life care and frailty pathways as a key system redesign/enabler to facilitate
delivery of care nearer to a person’s usual place of residence.
• Seehttp://www.endoflifecareforadults.nhs.uk/strategy/strategy/coordination-of-
care/end-of-life-care-information-standard for detailed information on
EPaCCS
• The national EPaCCS implementation team will be initiating widespread
consultation on the interoperability standards in the early autumn.http://www.networks.nhs.uk/nhs-networks/qipp-digital-technology-and-
vision
Key points for EPaCCS implementation
? Ensure full compliance with the information standard
? Link implementation to other strategic projects such as 111 roll out and care
co-ordination centre developments as has been done in London, South
Central and South of Tyne and Wear
? Assess the current IT infrastructure and landscape and build upon the best of
what already exists – don’t restart from scratch
? Involve all key stakeholders; be clear about the vision and get senior ‘buy-in’
across health and social care from the start. GPs were top priority for rollout
for the majority of early adopters, followed by community providers, out of
hours and ambulance services, and acute hospitals. Don’t forget
commissioners.
? Collect baseline data to support the case for change and allow measurement
of change over time
? Be realistic about what can be achieved.
? Consider a phased approach to implementation across care settings
? Local datasets, in addition to the core data set that complies with the
information standard, will need to be agreed and coding identified/developed.
? Agreeing an approach to reporting and monitoring will be of benefit. In
Somerset, a reporting template is in use of which others are taking note
? Recognise that N3 access is a key issue to be addressed
End of Life Care Strategy: Fourth Annual Report
52
Areas are adopting EPaCCS in ways which meet their own local need.
NHS Bedfordshire - Partnership for Excellence in Palliative Support (PEPS)
Across Bedfordshire, a single telephone number and central hub hosted by Sue
Ryder was established to co-ordinate all palliative care 24 hours a day, 365 days a
year using a shared electronic record on SystmOne. Led by NHS Bedfordshire and
Sue Ryder, 15 organisations now work in partnership to improve the experience and
continuity of care for patients in the last 12 months of life. PEPS also supports
generalist health and social care professionals to provide care at the patients’ place
of choice which is predominately at home.
Senior nurses are the first point of contact on the phone for patients, families, carers
and health and social care professionals so that the most appropriate health or social
care professional is identified to help patients in a timely manner.
An electronic palliative care coordination system (EPaCCS) was developed to
enable sharing of patient information utilising SystmOne. An information-sharing
protocol and patient consent forms are in place to support this.
Other services have been extended to enable equity across the county – eg. Face to
Face palliative nurse assessment out of hours, a palliative care support worker
service and extended hospice admission times.
Organisations committed to working together to deliver PEPS through signing a
memorandum of understanding. Individual meetings were also set up with CEOs
and a project group involving clinicians developed the operational policy.
The service is being evaluated, working with ScHARR (School of Health and Related
Research at Sheffield University). Since it began on 29th December 2011, 476
people have been registered with PEPS. Figures to the end of May 2012 showed
that of 156 deaths 69% were at home (including residential and nursing homes), 8%
in hospital and18% in a hospice.
Initial findings are positive, and include:
. Improved integration of acute and community care through hospital
engagement.
. The MDT team, through working with PEPS, are discharging patients home
more rapidly. The local hospital is now looking to install a SystmOne read
only facility to support this process.
. The co-ordination centre has been instrumental in supporting families
between discharge and start of care package arrangements.
Feedback about the service has been very positive from GPs, patients and their
relatives. Patients and families report feeling “secure” and “not feeling left alone”,
“Rather than giving long and complicated explanations about the different roles of
people who might get involved in care, this single point of contact is much less
confusing for patients. They can also be confident that they can make one call when
End of Life Care Strategy: Fourth Annual Report
53
they need help and someone else will decide who is best placed to help them and
arrange that contact.” (NHS Beds GP)
Jo Marshall
Business Development Manager
Tel 07825125291 or email [email protected]
The acute sector – the Transform Programme
Whilst the End of Life Care Strategy places great emphasis on community based
services to support people to be cared for at home, hospitals continue to play a
major role in care at the end of life. Many people will need some hospital care in
their final year and for many, hospital will be the right setting for their final days,
whether or not it would be their first choice as a place of care. It is therefore crucial
that we continue to work to improve hospital based end of life care so that a ‘good’
death can be achieved wherever the setting.
The NEoLCP is addressing this specifically through the Acute Hospitals Transform
Programme, working with 25 Acute Trusts representing 43 hospitals from across the
country in a 12 month programme based on implementing The route to success in
end of life care – achieving quality in acute hospitals (NEoLCP, 2010). Each Trust
has been supported by a comprehensive Transforming end of life care in acute
hospitals ‘How to’ guide developed in partnership with the NHS Institute for
Improvement and Innovation (NEoLCP, 2012). The guide recommends that boards
develop a trust level end of life care action plan, an education and training plan
around end of life care and monitor the quality and outcomes of individual care /
patient experience. Education and training good practice examples highlighted
amongst many others during the programme have included:
• one to one training for consultants [email protected]; and,
• end of life care training included in induction / preceptorship courses
[email protected]
While noting that direction and support from an ‘executive lead’ is crucial, the NHSI
Productive Ward approach used within the ‘How to’ guide centres on encouraging
and supporting frontline staff to consider for themselves how their working practices
and services can be streamlined and improved. Ward leaders and champions are
identified as particularly important in supporting this change process.
The guide follows the six step end of life care pathway which formed the basis of the
route to success. For each step of the pathway it outlines key actions, examples of
good practice and sources of information and support. Rather than introducing yet
more new tools the Transform Programme’s main emphasis is on the
implementation of five key existing system wide enablers (case studies shared
throughout this report):
• Advance Care Planning
End of Life Care Strategy: Fourth Annual Report
54
• Electronic Palliative Care Co-ordination Systems
• The AMBER Care Bundle
• The Rapid Discharge Home to Die Pathway
• The Liverpool Care Pathway.
Now entering its second phase the programme will be working with approximately 40
more acute hospitals nationally to share key learning and service improvements
which have been achieved using simple productive principles and the five tried and
tested key enablers.
Phase One participating Trusts
Phase 2 Trusts will:
• Receive electronic and hard copies of the ‘How to’ guide, containing useful
resources and podcasts;
• Be supported by neighbouring Phase 1 sites;
• Be provided with simple metrics that help them measure their own success;
End of Life Care Strategy: Fourth Annual Report
55
• Be invited to an end of first year event at the Royal Society of Medicine in
December 2012;
• Be invited to a national sharing event with Phase 1 and Phase 2 sites in
March 2013.
Carers’ Strategy
The Coalition Government continues to take forward the commitments set out in
Recognised, valued and supported: next steps for the Carers Strategy.
The Department of Health funded a programme of activities by the RCGP, Carers
Trust and Carers UK to increase awareness of carers' needs for support among
health care professionals. This programme included the appointment of GP Carer
Champions and volunteer Carer Ambassadors, the provision of in house training and
the dissemination of good practice. The Department is planning to build on this work
programme further in 2012/13, including extension to the acute hospital sector and
community nursing.
Independent evaluations of two Department of Health funded initiatives were
published in November 2011:
New Approaches to Supporting Carers' Health and Well-being: Evidence from the
National Carers Strategy Demonstrator Sites programmehttp://www.sociology.leeds.ac.uk/circle/news/new-approaches.php
Training and Supporting Carers: the National Evaluation of the Caring with
Confidence programmehttp://www.sociology.leeds.ac.uk/circle/circle-projects/completed-projects/evaluation-
of-the-caring-with-confidence-programme.php
In June 2012 the Department of Health co-hosted a National Summit with Employers
for Carers, which kick started some joint working to consider what further steps might
be taken to support carers to remain in paid employment, if that is what they wish to
do.
Carers are central to the Government’s proposals for care and support as set out in
the White Paper Caring for our Future and the draft Care and Support Bill. We will
be legislating to extend the existing rights to a carer’s assessment and provide
carers with a new entitlement to support to meet their needs. For the first time
carers will be placed on the same legal footing as the people they care for.
The draft mandate for the NHS Commissioning Board, which will be at the heart of
the accountability relationship between the Department of Health and the Board from
April 2013, contains a specific objective to improve the support that carers receive
from the NHS by earlier identification of carers and signposting to advice and by
working collaboratively with local authorities and carers’ organisations to enable the
provision of a range of support.
End of Life Care Strategy: Fourth Annual Report
56
Hospice Capital Grant
In May the Department announced a new £60 million capital grant scheme for
hospices. This scheme is open to both adults’ and children’s hospices. Help the
Hospices are managing the scheme and have run a series of roadshows to help
hospices to understand the process and requirements. The eligibility criteria are
available on their website. The deadline for applications is 5 November and
successful hospices will be informed of the outcome in March 2013.
End of Life Care Strategy: Fourth Annual Report
57
Chapter 5: Improving outcomes
for people approaching the end of
life: the last days of life and care
after death
Rapid discharge
Liverpool Care Pathway
Death certification
Bereavement
Tell Us Once
“Whenshewasinhospital,shewantedtocomehometodie.Therewasalotofstressonthefamily.”
“The(hospital)staffwereverysupportivetousasafamilyforwhichwewereverygrateful.Weasa
familywereallowedtostaywithhim24/7andwelookedafterallofhisneeds.”
“Myhusbanddiedpeacefully.Staffwerekindandconsiderateanditwasacomforttomeandthe
family”.
“Mywholefamilyfoundtheattitudeofthedoctorsandnursingstaffdeplorable.Weshouldputina
complaintbutduetooursadnesswejustwantedtoremoveourselvesfromthehospitalasquicklyas
possible”.
“TheMcMillannurseprovidedthebest–andonly–emotionalsupportforbothmumandourfamily.
Wehadconfidenceinhercare”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
Rapid discharge home to die pathway (Transform Programme Key
Enabler)
Many hospitals now operate a rapid discharge scheme to enable dying patients to be
transferred home within 24-48 hours. Some are even working towards discharge
within four hours for especially urgent cases.
All this requires clear pathways based on local procedures and close co-ordination
between all those involved. It also needs to take account of local working practices.
For example, some district nursing services will not care for someone at the end of
life if there is not a hospital bed within the home, so this may need careful advance
planning.
The handover of medication is also important. This means good documentation is
needed, using local prescription formats, to ensure that the medications started in
hospital can be given by community staff without having to wait for a GP to prescribe
them.
End of Life Care Strategy: Fourth Annual Report
58
Ideally a member of the hospital staff should accompany the person home where
they would be met by community staff. Face-to-face handovers tends to be more
effective, although this is not always possible.
Another critical element is careful, sensitive discussion with the individual and their
family so they understand the implications of a transfer. It also makes sense to
place relevant information on Electronic Palliative Care Coordination Systems
(EPaCCS), where established, to ensure care is co-ordinated between the different
services.
Royal Liverpool and Broadgreen University Hospitals Trust
The Royal Liverpool and Broadgreen University Hospitals Trust has been operating
a rapid discharge pathway for the last 10 years. Two years ago the Hospital
Specialist Palliative Care Team made a number of changes to bring it into line with
version 12 of the Liverpool Care Pathway for the Dying Patient.
A stakeholder meeting was used to address several key themes that had the
potential to delay the smooth operation of the discharge process. These were:
. the release of key medications from pharmacy;
. the production of equipment for the home; and
. the speed of response of the ambulance service.
In most cases this was a matter of speeding up the process but with equipment, for
example, it could be a matter of deciding which the priority was: locating the right
equipment or getting the patient home. The key was flexibility and placing the
patient’s wishes at the heart of everything.
The team also established two levels of urgency for those awaiting rapid discharge.
In future it would aim to discharge level one patients within six hours while level two
patients would be discharged within 12-24 hours.
The result has been a more streamlined service with all those who expressed the
wish to go home to die achieving their wishes within the allotted time. Inevitably, in
such a fast-moving scenario, some change their minds. Some families start going
through the process and then for one reason or another they find they can’t do this
and the patient stays in hospital.
The key to success is close co-ordination and good teamwork, working very closely
with the discharge planning team. Joint meetings with them and, especially, with the
patient and family are key to find out what their expectations are.
An average of 30 patients return home each year through the rapid discharge
pathway, and so far none has had to be readmitted or re-referred.
End of Life Care Strategy: Fourth Annual Report
59
The Liverpool Care Pathway (LCP) for the Dying Patient
The LCP is a multi-professional, outcome-driven document that provides an
evidence-based framework for the delivery of care in the last days or hours of life.
The use of the document should be underpinned by an implementation, education
and training programme and sit within the governance agenda of individual
organisations. It has been identified as best practice within the National Institute for
Health and Clinical Excellence (NICE) Guidance for Supportive and Palliative Care,
was highlighted as one of three end of life care tools by the Department of Health
and is recommended in the End of Life Care Strategy and Quality Markers.
Version 12 of the LCP, which was published in December 2009, retains the focus of
earlier documents on communication, information and comfort care in the last hours
and days of life. It also includes an algorithm to support the identification of the
dying phase and more explicit goals on hydration, nutrition and skin integrity.
Over 2,000 organisations in the UK are currently registered with the LCP central
team, including hospitals, hospices, care homes and home teams. In addition more
than 20 countries outside the UK are working with the LCP.
Cheshire and Mersey Critical Care Network12
The Marie Curie Palliative Care Institute Liverpool (MCPCIL) has been running a
pilot for the last nine months to introduce the latest version of the LCP into all 11
intensive care units within the Cheshire and Mersey Critical Care Network.
The project, funded by the Merseyside and Cheshire Cancer Network, has identified
key champions in each site who meet on a monthly basis to discuss progress. They
are also responsible for delivering education and training to their staff.
The LCP is an integral part of intensive care where, inevitably, the number of
unexpected deaths tends to be high. One major difference from other areas of care
is that the pathway may only come into play when decisions are taken to withdraw
treatment and this may be very shortly before the patient’s death.
When a patient is on a life support system then discussions start to take place
involving the family and multidisciplinary team. If it is decided to withdraw treatment,
the space of time between withdrawal and death can be measured in hours or even
minutes.
So far 10 of the 11 sites have achieved their targets of providing training to the
majority of CCU staff and have also placed an average of 17.5 patients on the
adapted LCP. One site has been unable to meet the targets and will not therefore
take part in the auditing process.
A final report on what has been achieved will be produced shortly.
The LCP and its associated audit, the National Care of the Dying (Hospitals) audit, is
referenced in the NICE Quality Standard.
End of Life Care Strategy: Fourth Annual Report
60
National Care of the Dying Audit Hospitals (NCDAH) Round 3
This audit has run now for three rounds to track progress on the implementation and
use of the Liverpool Care Pathway for the dying patient (LCP). The third audit was
able to draw on clinical data from over 7,000 individuals (from 127 NHS Trusts)
whose care was supported by the LCP.
Organisational data
This time 131 hospital Trusts submitted data into the organisational element of the
audit, an increase of 13% over Round 2. The data suggest the use of the LCP is
relatively well spread throughout each individual trust, with almost all wards (90%)
using the LCP to some extent. The proportion of all patients whose care was
supported by the LCP national core document or ‘matched alternative’ has increased
since NCDAH round 2 (R2 21%; R3 31%) which suggests that the LCP is becoming
more embedded in practice within each participating hospital Trust. There is also an
increase in the amount of education and training offered in care of the dying for
medical staff (R2: 74%; R3: 90%).
Clinical data
178 hospitals (from 127 Trusts) submitted a total of 7058 individual patient data sets
this time, which is a 13% increase on Round 2. Encouragingly, these showed that
where assessments were recorded in the last 24 hours, the majority of patients were
documented as comfortable.
There was wide variation in hospital performance for goals relating to conversations
with the patient regarding awareness of dying, and addressing cultural, spiritual or
religious needs. This suggests that practice across different hospitals may be very
different, but this is an area of particular interest when compared to the experience of
hospital care recorded through VOICES. However, where the data were recorded,
they showed that where it was not possible to enter into discussion with the person
these issues have been addressed with the relatives or carers:
• 94% of relatives/carers were given a full explanation of the care plan (LCP);
healthcare professionals were able to discuss this with 56% of people at the
end of life;
• 97% of relatives/carers were aware that the person was dying; healthcare
professionals were able to discuss this with 58% of people at the end of life;
• 90% of relatives/carers were given the opportunity to discuss any
spiritual/religious/cultural requirements at this time; healthcare professionals
were able to discuss this with 61% of people at the end of life.
Leeds Teaching Hospitals Trust – Equivalent LCP
An equivalent LCP (ELCP) was developed to ensure that Intensive Care Unit (ICU)
patients, who may die imminently once life sustaining treatment is withdrawn, receive
high quality care akin to those patients who are cared for in accordance with the
Liverpool Care Pathway (LCP). The ELCP is a four page document that addresses
End of Life Care Strategy: Fourth Annual Report
61
communication with relatives or carers, spirituality, medications, discontinuation of
interventions and organ donation. The ELCP includes a withdrawal of support
algorithm to assist the Multi-Disciplinary Team (MDT) in their decision making.
Initially the Specialist Palliative Care Team engaged with staff from five ICUs across
Leeds Teaching Hospitals Trust (LTHT) in an effort to understand the reasons
behind poor adoption of the ICU LCP (11% use in comparison with 42% use of the
generic LCP throughout the rest of LTHT (April 2011-Oct 2011)).
Critical care teams felt that the LCP was too lengthy, took too long to complete and
assessment time intervals were inappropriate to be of any value to those patients
who were expected to die imminently upon withdrawal of life sustaining treatment.
The new document was designed collaboratively between specialist palliative care
team members and critical care staff using an iterative process giving careful
consideration to the four domains of care covered by the LCP – physical,
psychological, social & spiritual. The emphasis was on the facilitation of optimal care
delivery supported by concise documentation.
Since the introduction of the ELCP in ICU there has been a 20% increase in use of
end of life pathways within LTHT ICUs. In March 2012, 43% of patients who died on
LTHT ICUs were treated according to an end of life care pathway. It is anticipated
that this will continue to rise with an estimated 50% of patients in ICU who die being
cared for in accordance with the ELCP or LCP by March 2013.
The next step to ensure the delivery of high quality end of life care in critical care
environments is the implementation of the ELCP in A&E departments.
The Leeds Teaching Hospitals Trust End of Life Care Pathway Facilitators play a key
role in sustaining the use of the ELCP through training, support, monitoring and
audit.
Death certification
The Department has been piloting a new medical examiner service to improve the
robustness and accuracy of death certification. This will meet a recommendation in
the Shipman report which found that the public had lost confidence in the current
processes. The new system will apply to all non-coronial cases regardless of
whether the family chooses cremation or burial. The Health and Social Care Act
2012 provides for the new service to be run by local authorities. The Department will
consult on the draft regulations later this year. Implementation is due to begin in
April 2014.
Bereavement
Last year we reported publication of a set of draft Quality Markers for bereavement.
These were considered by NICE as part of the process for developing the Quality
Standard for end of life care for adults, which covers bereavement issues.
End of Life Care Strategy: Fourth Annual Report
62
The Birmingham Bereavement Project
This project was hosted by University Hospitals Birmingham Foundation Trust in
collaboration with the Heart of England Foundation Trust and NHS West Midlands. It
involved establishing a model for providing seamless bereavement care, including a
help and support service for those who had been bereaved.
Bereavement staff aimed to contact all bereaved relatives four weeks after a death to
discuss how they were and whether they had any questions or concerns.
During the pilot 1,856 bereaved families were offered the service and 725 took up
the offer of the call. The vast majority – 94% - required only one call but a small
minority needed further help. The report of the pilot says “It is believed that these
follow-up phone calls facilitated early intervention and [resolved] situations which, if
left unaddressed, would have resulted in a costly formal complaint.”
The project was boosted by becoming an early adopter of the new death certification
process. This led to more open and honest communication with families, enhanced
training and education for junior doctors and provided more accurate information
about causes of death.
The report recommends that the project – which has been shortlisted for a Nursing
Times award - should continue in both participating trusts and that six-monthly
reviews should be established to ensure its benefits are maintained.
A new advice website and helpline has been set up as part of the project.http://www.birminghambereavementadvice.co.uk/about-us.php
Tell Us Once
Guest contribution by Jonathan Stampton, Tell Us Once Delivery Partnerships Team
Bereavement is a very difficult time for people and it doesn’t need to be made harder
by government red tape. The Tell Us Once service makes reporting a death easier
and saves people having to notify numerous central government and council
services.
Before Tell Us Once, on average, a person experiencing a bereavement would have
to contact government seven times. Each time they often had to post off a death
certificate which could be expensive as well as time consuming.
Tell Us Once is a much easier way to report a death and there are three channels to
choose from: a face-to-face interview, dedicated telephone line or online service.
The service notifies 28 key local and central government departments and services
in a single appointment with the local authority. These services include: State
Pension; Council Housing; Council Tax Benefit; UK Passport; Library Services;
Personal taxation; and Driving licence.
Tell Us Once is now available in 80% of local authorities in England, Scotland and
Wales and coverage will rise to about 90% in the next few months. Although
End of Life Care Strategy: Fourth Annual Report
63
voluntary, the new service is popular with the people that use it and where it is
available, is already chosen by about 70% of people reporting a death.
Further information can be found at: www.direct.gov.uk/death-tellusonce Contact:
[email protected]
End of Life Care Strategy: Fourth Annual Report
64
Chapter 6: Improving outcomes
for people approaching the end of
life: commissioning and levers for
change
Commissioning in the new NHS
NICE Quality Standard and benchmarking tool
End of Life Care Quality Assessment
Workforce - e-learning
Personal health budgets
Palliative Care Funding
“Iwishtosaythatthecaremymotherreceivedduringthelastfewhoursandminutesofherlifewasto
anexcellentstandard.Asyoucantell,itismylastingandpeacefulmemoryandthatwasallduetothe
thoughtfulnessofthestaffatXUniversityHospital.”
“WardXwasdreadfulforhim;thenursesdidnotseemtocare...WardY:thedoctorsandnurses
weremarvellous;theycaredabouthimandus,thefamily”.
“Themostdistressingthingwasbeingunabletogethelpwithtoiletingetcduetotimepressuresof
staff.Hefounditverydistressingwhenthebellwasignored”.
“Wedidfeelthatthe‘system’letDaddown.Hisconditionwasinadequatelymanagedandour
concernsignoredordismissed”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
Commissioning in the new NHS
Over the last year the National End of Life Care Programme (NEoLCP) has been
engaging with emerging Clinical Commissioning Groups (CCGs) to understand how
best to support them as they take on responsibility for commissioning end of life care
services. They are now working with a network of about 100 CCGs. They ran a
series of six events across the country which attracted 600 delegates and which
were well evaluated.
The events featured the Critical Success Factors (CSF) which the NEoLCP
published this year. Following consultation with PCTs the consensus was that
delivering high quality end of life care locally depended on a small number of CSFs:
• Strong commissioning and clinical leadership;
• Use of nationally recognised drivers that attract payment – Local Enhanced
Services ( LES) and Commissioning for Quality and Innovation (CQUINs);
• Flexible budgets and care packages – integrated care;
End of Life Care Strategy: Fourth Annual Report
65
• Use of nationally recognised tools or their local equivalent – advance care
planning (ACP), Gold Standard Framework (GSF), Liverpool Care Pathway
(LCP), Preferred Priorities for Care (PPC), (After Death Audits) ADAs and
Continuing Healthcare (CHC) Fast Track Pathway;
• Shared electronic information systems – Electronic Palliative Care
Coordination Systems (EPaCCS);
• Clearly defined access to 24 hour cover;
• Development of care homes – service improvement in the acute sector will
not be achievable without improvements in care homes;
• Use of facilitator roles and co-ordination of care across boundaries –
integrated care;
• Training to support staff delivering end of life care.
Improving End of Life Care Services by moving to outcome-based contracts
The strategic end of life care (EoLC) Programme for NHS South of England Central
was established in 2010. One of its first priorities was to bring together EoLC
commissioners and providers from across health and social care and the statutory,
voluntary and independent sectors to produce recommendations for contract
negotiations. Given the success of this work, in 2011 EoLC was the first area
chosen to implement outcome-based contract recommendations across acute,
community, mental health and care home providers. Ensuring the contract
inclusions follow the patient pathway, and are the same across all sectors and
settings, means there are no perverse incentives in the system. Localities can work
together on how most effectively to achieve the ultimate outcome of people
achieving their preferred place of death. As this process has evolved it has also
been possible to help providers move to a position where they can achieve this
outcome, initially by asking that processes are in place for advance care planning
and more recently that where people do not achieve their preferred place of death
reasons for this are audited and an action plan put in place across the locality.
Lucy Sutton, EoLC Lead, NHS South of England: [email protected]
NICE Quality Standard and guidance for commissioners
In November 2011 the National Institute for Health and Clinical Excellence (NICE)
published a Quality Standard for end of life care for adults, followed in December by
a Guide for commissioners on end of life care for adults, accompanied by a
commissioning and benchmarking (CAB) tool.
The Guide applies to all adults approaching the end of life. It provides links to
condition-specific materials but the overall message is that a generic approach will
meet most needs. It is also clear that end of life care involves the NHS, social care
and the voluntary sector.
End of Life Care Strategy: Fourth Annual Report
66
The Guide is intended to support implementation of the Quality Standard, which itself
broadly follows the structure of the end of life care pathway set out in the End of Life
Care Strategy, with a special section for workforce.
In the CAB NICE has brought together the best available financial information for
end of life care. It allows commissioners to select their local population and compare
it against the national average and it will then model savings based on reducing the
numbers of deaths in hospital. The guide also suggests that commissioners should
carry out more detailed local analysis of factors such as admissions in the last year
of life, type of admissions and variables such as cause of admission and condition.
This in turn is supported by the locality profiles developed by the National End of Life
Care Intelligence Network (NEoLCIN) and available on their website.
The NEoLCP has been working in partnership with commissioners to develop a web
based toolkit which provides a one stop shop by identifying the relevant resources
and sources of information and data to support effective end of life care
commissioning. The toolkit is built on a four stage commissioning cycle and
promotes joint working across social and health care services and is available on the
NEoLCP website.
www.endoflifecareforadults.nhs.uk/
End of Life Care Quality Assessment (ELCQuA)
ELCQuA is an online tool available on the NEoLCIN website which allows localities
to record, track and benchmark their progress against the Quality Markers and
Measures published by the Department of Health in 2009. These are currently being
updated to bring them into line with the NICE Quality Standard.
Workforce
Workforce development underpins the majority of end of life care service
improvements as it not only increases levels of competence and confidence but also
contributes to shifting behavioural change around end of life care. Examples of this
can be seen in other sections of the report such as GP training in initiating
conversations to support the ‘Find your 1% Campaign’ and Quality End of Life Care
for All, the partnership training between hospices and acute hospital nurses to
support the Transform project.
Multi Professional Education and Training (MPET) funding has enabled local projects
to be developed and embedded. The new opportunity for local commissioners and
providers is to establish links to Local Education and Training Boards (LETBs) to
influence decisions around education and training investment. Each constituent
provider organisation within the LETB will be able to contribute to the identification
and agreement of local priorities for the local workforce.
Nationally Skills for Care, Skills for Health and the NEoLCP produced an updated
edition of their work on competences Developing end of life practice: A guide to
workforce development to support social care and health workers to apply common
End of Life Care Strategy: Fourth Annual Report
67
core principles and competences for end of life care. Work is also planned to build
on both the end of life care competences and the e-learning programme, End of Life
Care for ALL (eELCA), to the Qualifications and Credit Framework (QCF).
Developments include mapping elements of the 6 Steps programme for Care Homes
to QCF.
eELCA now has 156 sessions to enable all health and social care staff free access
to end of life care learning materials. Work has been undertaken in Oxfordshire to
develop a series of blended learning pathways for volunteers, Band 5 nurses and GP
Trainees with specialist palliative care services, acute staff, ambulance staff and out
of hours staff. These pathways are being tested and should be widely available by
the end of the year. e-Learning for Health and NEoLCP have launched a resource
pack e-ELCA getting started and support pack which aims to help individuals or
training facilitators get started and use it to best meet their own and professional
needs.
Southport and Ormskirk NHS Trust – eELCA Case Study
Southport and Ormskirk NHS Trust have developed a new approach to end of life
education. We are a large Integrated Care Organisation with two hospital sites and
cross boundary primary care is a large part of our workforce. Our plan was to
develop an education programme which all grades of staff can access and allows the
staff the freedom to choose the level of education they require for their job and/or
interest. We developed the name “Skills Set Challenge”
The basis of the Skills Set Challenge was the use of e-ELCA as a theoretical
background to all education. By using the eight different “branches” or subject
matters within e-ELCA we grew a “tree” of education. Each “branch” of the tree
relates to a particular topic such as “symptom management”, and will have a bronze,
silver and gold level within.
The e-ELCA sessions within each module have been allocated to a “bronze”, “silver”
or “gold” level, and are being used as the theory to back up face to face teaching and
established courses available within the Trust and Queenscourt Hospice.
There will be some skills training available within certain levels of the Challenge and
reflective practise and case studies will cement knowledge already achieved. Staff
will be encouraged to start at a bronze level and work their way around all the
“branches” of the tree. Once all areas have been covered a Bronze Award will be
presented in the form of a bronze edged pin badge depicting an oak tree.
Staff will be able to further their knowledge should they require or wish by
undertaking course work at both silver and gold level. Similar awards will be
available relating to the level of education achieved. Education already obtained, by
the way of courses undertaken can be evidenced as part of the new pathway. Each
level will require staff to evidence their achievements by the collection of certificates
of e-ELCA modules completed and any training/courses attended. This will develop
into an End of Life education portfolio.
End of Life Care Strategy: Fourth Annual Report
68
e-ELCA was the basis for the new approach to end of life education and the
overwhelming incentive to use the modules was the ease of access, the quality of
education provided and the ability to use/study with e-ELCA at home, away from the
work environment.
Initial trials have proven a positive response and we aim to roll out Trust wide in the
coming weeks to coincide with the London Olympics.
Elaine S. Deeming, TRANSFORM Clinical Lead, Umbrella House,
Southport Hospital
[email protected]
NHS Midlands & East – East of England End of Life Care ABC Education
Programme for Group B Staff
The ABC education programme is funded for two years and is available to all Group
B Staff (health and social care professionals who frequently deal with end of life care
as a part of their role) in acute and primary care trusts throughout the East of
England. This free of charge, blended learning programme (e-learning and face to
face sessions with an identified mentor) is based upon the End of Life Care Strategy
(2008) and end of life care core competencies (2009). It is designed to give learners
a broad introduction and overview to end of life care.
The programme makes use of 10 ‘essential’ e-learning sessions from the national
programme of over 150 sessions within e-ELCA. The education is based upon the
five competency areas:
• Overarching Principles
• Advance care planning
• Assessment
• Communication Skills
• Symptom management, comfort and well being
This introductory course is designed to be flexible and takes approximately 6 hours
over six weeks. The e learning sessions are now available as a single learning
pathway on Oracle Learning Management (OLM) which is hoped will make access
much easier for trainees. At the end of the e-learning students are encouraged to
reflect on their learning to demonstrate the transition of theory to practice and are
invited to take part in a consolidation workshop.
Due to difficulties with accessing the e-learning via OLM or eLearning for Health
(eLfH), the East of England facilitators also provide the education via face to face
workshops which are proving to be successful (see quotes below) and now over 800
Group B staff have been trained to date.
“I really enjoyed working through the 10 modules, which I could do at my own pace. I
have learnt a lot and will hopefully make a difference to my patient care. I am now
using the references to read more about end of life care”. (Staff Nurse, Oncology,
Anglia)
End of Life Care Strategy: Fourth Annual Report
69
What will change because of this experience? “I feel more confident at talking
around these issues [end of life care] well before a patient is too ill to consider the
situation and make plans personal to them. I realise that I have often been with
patients who are so ill that sensible communication is past”. (GP, Essex)
Contact: Vanessa Convey, Palliative and End of Life Care Education & Training
Programme Manager, East of England Multi-Professional Deanery,
[email protected]
Opening the Spiritual Gate (e-OSG): Reaching a critical mass of the workforce
by the addition of e-learning.
"People approaching the end of life are offered spiritual and religious support
appropriate to their needs and preferences" (NICE, Quality Standard for end of life
care for adults, 2011)
An established face to face study day to raise spiritual awareness 'Opening the
Spiritual Gate' (OSG) is delivered to the health and social care workforce across
Merseyside & Cheshire Cancer Network (MCCN) and Greater Manchester &
Cheshire Cancer Network (GMCCN). The course consists of four modules or
sessions:
. 'Understanding Meaning' - definitions, distress, religious needs, rites & rituals;
. 'Communication' - opening, maintaining and closing conversations in which
the person is able to voice concerns and encouraged to make their own plan
as well as dealing with questions about the health professionals own beliefs;
. 'Recording & Reporting' - consideration of how to document and hand over
sensitive issues concisely and accurately, whilst maintaining confidentiality;
. 'Pulling it all together' - exploring how to meet national & network guidance,
action planning for future care and mapping local spiritual resources.
MCCN funded Edgehill University to work with MCCN Spiritual Care Group to
convert the OSG course to a 4 week, facilitated, constructivist, e-learning format.
As with the face to face version the facilitators are health professionals, role
modelling the point that assessing and addressing spiritual needs of patients is a
responsibility of everyone.
Eleven e-learning courses have been delivered now to 90 mixed health and social
care professionals, compared to the 763 face to face. The main difference between
the face to face and online OSG seems to be the opportunity for richness and depth
of discussion due to greater anonymity and time for reflection and consolidation of
thought, as well as the support each individual cohort provides for one other.
Many participants have said that this course has changed practice and
documentation. Where whole, smaller, organisations have delivered the course to
their entire workforce, audits are underway to demonstrate the differences that this
has made.
End of Life Care Strategy: Fourth Annual Report
70
Formal evaluation of the face to face and e-learning course is being undertaken this
year and the course is proving of interest to individuals and organisations further
afield.
www.openingthespiritualgate.net
[email protected]
[email protected]
Personal health budgets
Personal health budgets are one way of giving people more choice and control over
how their health needs are met, but they are new to the NHS. A pilot programme
involving around half the PCTs in England has been running since 2009 and is due
to end in October with the publication of an independent evaluation report.
Subject to this evaluation, personal health budgets will be rolled out more widely,
with CCGs being able to offer them on a voluntary basis. The longer term aim is to
introduce a right to a personal health budget for everyone who could benefit, with
people receiving NHS Continuing Healthcare being the first to have a right to ask for
one from April 2014.
A number of stories are available at:
www.personalhealthbudgets.dh.gov.uk/About/Stories/ which describe what is
involved and how people have used their personal health budgets. The examples
include people paying for personal assistants to care for them or a loved one in their
own home or using complementary therapy to help with pain relief.
Palliative Care Funding
The End of Life Care Strategy Third Annual Report referred to the work undertaken
by the independent Palliative Care Funding Review.
One key conclusion of the review was that “There is a stunning lack of good data
surrounding costs for palliative care in England.” It recommended that a number of
pilots be set up to collect data and refine its proposals due to the lack of good quality
data currently available. The Government accepted this recommendation.
In November 2011 the Department issued a call for expressions of interest in being a
Palliative Care Funding pilot site. The response to this call was overwhelming, with
a total of 65 submissions being received. Ministers selected and announced the
seven adult and one children’s pilot site in March 2012.
The pilots are all local partnerships and the adult sites are being led by:
• NHS North Yorkshire and York
• St Christopher's Hospice, London
• University of Sheffield
• University Hospital Southampton NHS Foundation Trust
End of Life Care Strategy: Fourth Annual Report
71
• The Heart of Kent Hospice
• Poole Hospital NHS Foundation Trust
• Royal Wolverhampton Hospitals NHS Trust
The pilot for children’s services is a consortium being led by the following
organisations:
• East of England Child Health and Wellbeing Team
• West Midlands Paediatric Palliative Care Network
• Great Ormond Street Hospital, London
• Northwest Children and Young Peoples Palliative Care Network
The pilots will collect the data that will provide the information we need to test the
Palliative Care Funding Review’s recommendations. The Government has provided
£1.8 million funding support for the pilots over two years to March 2014.
This funding was increased in July this year to £3.6 million, following publication of
the Care and Support White Paper. The White Paper considered there to be much
merit in the Palliative Care Funding Review’s recommendations on a fully integrated
health and social care system at the end of life. The additional funds will enable the
palliative care funding programme to look in detail at this proposal.
The Palliative Care Funding Pilots Working Group, chaired by Professor Sir Mike
Richards, has been established and is monitoring the progress of the pilots.
End of Life Care Strategy: Fourth Annual Report
72
Appendix – publications from the
National End of Life Care
Programme and the National End
of Life Care Intelligence Network
• The route to success in end of life care – achieving quality for social work
(July 2012)
• The route to success in end of life care – achieving quality for lesbian, gay,
bisexual and transgender people (June 2012)
• TEST (Training, Engagement, Services, Transferability and sustainability):
Supporting people to live and die well (May 2012)
• What do we know now that we didn't know a year ago? New intelligence on
end of life care in England (NEoLCIN, May 2012)
• Planning for your future care (February 2012) and foreign language versions
published in April 2012: Arabic, Bengali, Mandarin, Polish, Punjabi and Urdu
• End of life care co-ordination implementation guidance, record keeping
guidance and record keeping summary (March 2012)
• Deaths from Liver Disease: Implications for end of life care in England
(NEoLCIN, March 2012)
• The route to success in end of life care - achieving quality in ambulance
services (February 2012)
• Transforming end of life care in acute hospitals: The route to success ‘how to’
guide (February 2012)
• Evaluating NEoLCP’s work to support and promote the integration of social
and health care (The University of Nottingham, February 2012)
• Developing end of life care practice: A guide to workforce development to
support social care and health workers to apply the common core principles
and competences for end of life care (NEoLCP, Skills for Care, Skills for
Health, February 2012)
• Critical success factors that enable individuals to die in their preferred place of
death (February 2012)
• Deprivation and death: Variation in place and cause of death (NEoLCIN,
February 2012)
• Independent evaluation of social care test sites (Centre for Housing Policy,
the University of York, January 2012)
• When a person dies: guidance for professionals on developing bereavement
services (Bereavement Services Association, Primary Care Commissioning,
NEoLCP, October 2011)
End of Life Care Strategy:
73
• The route to success in end of life care – achieving quality in prisons and for
prisoners (September 2011)
• Routes to success: achieving quality environments for care at end of life
(August 2011)
• Preferred Priorities for Care tool support resources, including easy read
version, electronic version and support sheet, (September 2011)
• End of life care in extra care housing: a learning resource pack
doc_294133709.pdf
Fourth Annual Report
‘How people die
remains in the memory
of those who live on’
Dame Cicely Saunders
Founder of the Modern Hospice Movement
October 2012
End of Life Care Strategy: Fourth Annual Report
2
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End of Life Care Strategy Fourth Annual Report
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© Crown copyright 2012
First published October 2012
Published to DH website, in electronic PDF format only.
www.dh.gov.uk/publications
End of Life Care Strategy: Fourth Annual Report
4
Contents
Contents ..................................................................................................................................... 4
Foreword .................................................................................................................................... 6
Executive Summary ................................................................................................................... 8
Chapter 1: Meeting the challenges of end of life care .............................................................. 11
End of Life Care and the NHS Commissioning Board .............................................................. 11
The Mandate, NHS Outcomes Framework and Commissioning Outcomes Framework .......... 12
The National End of Life Care Programme .............................................................................. 12
Quality, Innovation, Productivity and Prevention (QIPP) .......................................................... 12
Palliative Care Funding ............................................................................................................ 14
The Social Care White Paper - Caring for our future: reforming care and support ................... 15
Chapter 2: The Information Revolution for people approaching the end of life ........................ 16
The Information Strategy .......................................................................................................... 16
Dying Matters ........................................................................................................................... 16
The National End of Life Care Intelligence Network (NEoLCIN) .............................................. 20
Electronic Palliative Care Coordination Systems (EPaCCS) .................................................... 21
VOICES.................................................................................................................................... 22
Equality Issues ......................................................................................................................... 25
Housing .................................................................................................................................... 27
Research .................................................................................................................................. 27
Chapter 3: Improving outcomes for people approaching the end of life: identification and care
planning.................................................................................................................................... 28
Find Your 1% ........................................................................................................................... 29
AMBER Care Bundle ............................................................................................................... 31
Advance Care Planning (ACP) ................................................................................................. 32
DNACPR .................................................................................................................................. 35
Choice ...................................................................................................................................... 37
Dementia – the Prime Minister’s Dementia Challenge ............................................................. 37
Cancer...................................................................................................................................... 39
Social Care ............................................................................................................................... 39
Chapter 4: Improving outcomes for people approaching the end of life: coordination and
delivery ..................................................................................................................................... 45
EPaCCS ................................................................................................................................... 45
The acute sector – the Transform Programme ......................................................................... 53
End of Life Care Strategy: Fourth Annual Report
5
Carers’ Strategy ....................................................................................................................... 55
Hospice Capital Grant .............................................................................................................. 56
Chapter 5: Improving outcomes for people approaching the end of life: the last days of life and
care after death ........................................................................................................................ 57
Rapid discharge home to die pathway (Transform Programme Key Enabler).......................... 57
The Liverpool Care Pathway (LCP) for the Dying Patient ........................................................ 59
National Care of the Dying Audit Hospitals (NCDAH) Round 3 ................................................ 60
Death certification .................................................................................................................... 61
Bereavement ............................................................................................................................ 61
Tell Us Once ............................................................................................................................ 62
Chapter 6: Improving outcomes for people approaching the end of life: commissioning and
levers for change ...................................................................................................................... 64
Commissioning in the new NHS ............................................................................................... 64
NICE Quality Standard and guidance for commissioners ........................................................ 65
End of Life Care Quality Assessment (ELCQuA) ..................................................................... 66
Workforce ................................................................................................................................. 66
Personal health budgets .......................................................................................................... 70
Palliative Care Funding ............................................................................................................ 70
Appendix – publications from the National End of Life Care Programme and the National End
of Life Care Intelligence Network ............................................................................................. 72
End of Life Care Strategy: Fourth Annual Report
6
Foreword
The NHS is currently undergoing transformational change. This
includes a complete revision of the Department of Health itself,
the emergence of the NHS Commissioning Board and the
development of a new Improvement Body.
Over the past few years end of life care has itself been in the
process of transformational change. That change has been
driven by innumerable partnerships, working to a common
agenda set out in the End of Life Care Strategy published in
2008. This report shows how far we have come in just four years. As we handle the
process of transition from the old structures to the new, it is salutary to revisit the
strategy’s big ideas and to see how they have been turned from paper to reality.
To tackle the taboo on discussing death, the Strategy proposed “A national coalition
to raise the profile of end of life care and to change attitudes to death and dying in
society”. The National Council for Palliative Care has set up the Dying Matters
coalition. From a standing start in 2009 it now has more that 20,000 members. This
year’s Awareness Week has been evaluated as reaching more than 170,000 people
through events and activities run by Dying Matters members, while the Dying Matters
website received record numbers of visitors, with almost 100,000 page views - an
increase of 230% on last year’s awareness week.
“Care plans, including the person’s preferences, wishes and views on resuscitation,
should be available to all who have a legitimate reason to access them … Holding
the plan electronically will facilitate this…” Electronic Palliative Care Coordination
Systems (EPaCCS for short, or locally named like London’s Coordinate My Care)
are now either in place or in development across the country. More to the point,
outcomes data show that they are making a major contribution to enabling people to
be cared for and to die in their place of choice.
“Following appropriate modification and piloting, regular surveys of bereaved
relatives will be commissioned by the Department of Health ...”. We have just had
the results of the first national VOICES survey. This gives us the first systematic
account of how people actually experience care in the last three months of life,
whether they are in hospital, in a care home, a hospice or at home, or whether their
care involves a combination of different settings. This sort of information is vitally
important to local providers and commissioners – not just to show them how they
compare, but to help them to track improvement.
“...The Department of Health will commission the development of an End of Life Care
Intelligence Network.” The National End of Life Care Intelligence Network took off in
2010. Its members – data owners and users from the statutory and voluntary
sectors – have enabled South West Public Health Observatory to bring together
different datasets which have transformed end of life care intelligence from
something relying almost entirely on mortality data, into a wide range of themed
End of Life Care Strategy: Fourth Annual Report
7
reports and locality profiles. What We Know Now… demonstrates the range of
intelligence available now that simply did not exist in 2008.
These are just some of the most notable achievements. This report goes into more
detail, including examples of how different areas are using the national tools and
intelligence and innovating locally.
But we haven’t finished.
The challenge now is to make sure that we take all of this progress into the new
organisations. We have demonstrated that end of life care can bring together health,
social care and the voluntary sector, to the benefit of those approaching the end of
life, their carers and families. This is truly an area of work which unites rather than
divides.
We have benefited hugely from our committed champions across the organisations
and across the sectors. Inevitably, in such a major reorganisation, some of them will
move away. Some will be able to promote this work from new positions – for my
part, I shall be as committed in my new role at Imperial as I was in my old one at
Marie Curie. We have sadly to relinquish Professor Sir Mike Richards, who has
provided such outstanding leadership as National Clinical Director for End of Life
Care, to new responsibilities but I know that he will not miss any chance to improve
this area of care too. And we are delighted that Dr Martin McShane will be the new
champion for end of life care in the NHS Commissioning Board.
The End of Life Care Strategy says “How we care for the dying is an indicator of how
we care for all sick and vulnerable people. It is a measure of society as a whole and
it is a litmus test for health and social care services”. This is as true today as it was
in 2008.
This report is a chance to celebrate the progress we have made, and to take stock
for the challenge ahead.
Sir Tom Hughes-Hallett
Chairman, End of Life Care Strategy Implementation Advisory Board
End of Life Care Strategy: Fourth Annual Report
8
Executive Summary
Dear Secretary of State
I am delighted to present the fourth annual report on progress in
implementing the End of Life Care Strategy.
Last year I was able to report a growing recognition of the
importance of end of life care, against a backdrop of preparation
for the full implementation of the NHS reforms. This year the
reforms have moved to centre stage but end of life care has
continued to be a priority, as was evidenced by the number and
range of case studies offered for inclusion in this report. We have seen important
developments in embedding many of the key elements set out in the Strategy.
We are also able to point to tangible progress in improving end of life care. Deaths
in usual place of residence (DiUPR) – the main marker of progress for the Strategy
as well as the first Key Performance Indicator for our Quality, Innovation, Productivity
and Prevention (QIPP) workstream - are continuing their steady rise, accompanied
by a drop in deaths in hospital. I can report that, nationally, 42.4% of people are now
dying at home or in a care home. While this does not necessarily capture individual
patient choice it is nonetheless a good proxy. I am especially encouraged to note
that progress is visible in all of the old Strategic Health Authority regions, regardless
of their baseline. London, which had the lowest starting point, has made progress
comparable to the South West, which started highest.
Dying Matters continues to make major strides towards engaging the public and
tackling the taboo of discussing death and dying. Its membership now stands at
more than 20,000. This year’s Awareness Week in May was marked by a vast
amount of local activity, suggesting that Dying Matters’ members are taking
ownership of the agenda in their area. Over that week there were also more than
400 pieces in the print media, including mainstream national papers. This is in
marked contrast to the picture when the National Council for Palliative Care
accepted the challenge to set up the Coalition in 2009.
Find Your 1%, which aims to engage GPs in identifying the individuals on their lists
who might be in their last year of life, so that they can undertake end of life care
planning with them, has reached its midpoint target of 1,000 GPs signed up by
August 2012.
We are also starting to see excellent results from Electronic Palliative Care
Coordination Systems (EPaCCS). These record people’s actual choice for their
place of care; and where they are best established they are already showing
significant reductions in hospital deaths and as many as 80% of people dying in their
preferred place. EPaCCS are now spreading rapidly across the country, supported
by the National End of Life Care Programme (NEoLCP), an Information Standard
and work on interoperability. The more they become the norm the more we can rely
on the DiUPR data as a close match for actual choice.
End of Life Care Strategy: Fourth Annual Report
9
We also have the results from the first ever national VOICES survey of bereaved
relatives. These provide a mine of fascinating information on the quality of care
delivered in the last three months of life. Not surprisingly, hospice care is the most
highly rated, followed by care at home. However, care in care homes is only
narrowly behind. Care provided to people dying in hospitals was rated much more
poorly. This is an area which needs to be given very high priority, as hospitals are
likely to remain the most common place of death, even with a shift to community-
based care.
VOICES still has much to tell us in the freetext responses, which are currently being
anonymised to make the material useable for research. While many comments
highlighted poor experience this was often in order to contrast it with better care in a
different setting or from different staff. The single longest contribution, which ran to
51 pages, was about excellent care.
VOICES is being run now for its second year. At present we can analyse the data to
PCT cluster level, which already shows wide variations. The cumulative data from
successive surveys will allow us to look in more detail at different localities as well as
to start tracking progress in the different care settings. It is also the source of an
Indicator in Domain 4 of the NHS Outcomes Framework, ensuring that it will be a
priority for the NHS.
Picking up the challenge illustrated by the VOICES findings, the NEoLCP’s
Transform programme for the acute sector started working with 25 Trusts. Because
of intense interest another 40 hospitals will be attending shared learning events this
autumn. Transform is based on the Route to Success for the acute sector. The
programme is centred on five key enablers – Electronic Palliative Care Coordination
Systems, Advance Care Planning, the AMBER Care Bundle, the rapid discharge
home pathway, and the Liverpool Care Pathway.
The National End of Life Care Intelligence Network has added significantly to the
information available and useful to both commissioners and providers. Its locality
profiles now include information about social care and can be viewed at local
authority level. A summary of What We Know Now brings together key information
which was not available before the Network started its work. From its new home in
Public Health England it will continue to provide the information commissioners and
providers need to carry out their roles. For example, it will continue to host the End
of Life Care Quality Assessment (ELCQuA) tool for benchmarking and tracking
progress, revised to align it to the new NICE Quality Standard for end of life care for
adults. All of this is readily available on the Network’s website.
In April responsibility for the End of Life Care Strategy will move from the
Department of Health to the NHS Commissioning Board where it will be the
responsibility of the Board’s Medical Directorate. The work will form part of Domain
2 – Long Term Conditions. This makes a good match. Much of the work which is
now bearing fruit for end of life care – EPaCCS, and integrated care, for example –
will be of interest in improving care for conditions such as dementia, helping to
deliver on the Prime Minister’s Dementia Challenge. End of life care will also have
relevance to the other Domains, whether they focus on urgent care or on patient
End of Life Care Strategy: Fourth Annual Report
10
experience. The second VOICES survey will add richness and depth to our
understanding of how people experience end of life care.
As Strategic Health Authorities and Primary Care Trusts wind down, so Clinical
Commissioning Groups (CCGs) are beginning to pick up their role in commissioning
and promoting these services. The NEoLCP has been working with a network of
about a hundred CCGs to ensure not only that they know about the wealth of
resource already available to them on end of life care, but that we listen to them and
tailor support to their needs. The NEoLCP has also been supporting a network of
about 360 end of life care facilitators, who are based in all parts of the service, and
has established a new group of more than a hundred social care champions. These
people will help to ensure that end of life care is embedded in new plans in the future
health and social care landscape.
Ministers have made a commitment to evaluate progress on end of life care to
determine whether it is possible to introduce a right to choose to die at home. Over
the next year the focus will continue to be on supporting people to be cared for and
to die in their place of choice, providing community-based services to enable this to
happen. Integration of services is key to this and will be a theme for the new
Improvement Body, which will enable us to continue to work with our range of
partners in the statutory, voluntary and private sectors. At the same time the
Transform programme will continue to support improvement in end of life care in
hospitals.
We shall also see progress on Palliative Care Funding, as the eight pilots start to
generate the data needed to take forward the work started by the independent
Palliative Care Funding Review.
The progress we have seen to date is the summation of a great deal of work by a
wide range of individuals including those in the Strategic Health Authorities and
Primary Care Trusts, as well as the National End of Life Care Programme. I should
like to take this opportunity to offer them my personal thanks.
It has been a privilege to lead work on end of life care. I am delighted to be able to
hand it on to Martin McShane in such good shape.
Professor Sir Mike Richards
National Clinical Director for End of Life Care
End of Life Care Strategy: Fourth Annual Report
11
Chapter 1: Meeting the
challenges of end of life care
End of Life Care and the NHS Commissioning Board
The Mandate
The NHS Outcomes Framework
The Commissioning Outcomes Framework
The National End of Life Care Programme and the new
Improvement Body
Quality, Innovation, Productivity and Prevention - QIPP
Palliative Care Funding
The Social Care White Paper – Caring for our future
End of Life Care and the NHS Commissioning Board
Responsibility for end of life care, and for the End of Life Care Strategy, is to move
from the Department of Health to the NHS Commissioning Board from April 2013.
As it is an overarching topic, the work will necessarily span the three Domains of the
NHS Outcomes Framework that are the responsibility of the Board’s Medical
Directorate. However, its ‘home’ Domain will be Long Term Conditions. This should
ensure continuity and build on the progress made since the Strategy was launched
in 2008.
Clinical Commissioning Groups – North Hants CCG
North Hants CCG has developed and implemented an end of life care pathway for all
patients thought to be in the last 12 months of life. This has been a collaborative
effort between the CCG, Hampshire Hospitals Foundation Trust, St Michael's
Hospice, Southern Health and Adult Social Services. The development of six
integrated care teams covering the area has been key to the pathway. Two of the
teams have a social worker directly involved as a pilot. The 'Find the1%' campaign
has been used to identify end of life patients and this has been linked to the long
term conditions work through the use of the Adjusted Clinical Groups (ACG) GP-
based risk stratification tool. The local Electronic Palliative Care Coordination
System/ End of Life Care Locality Register is about to go live which will be vital for
communication between the agencies involved in the care of these patients. The
CCG has also developed a 'Gold card' scheme which identifies these end of life care
patients to health and social care professionals as well as helping patients access
appropriate care.
Charlotte Hutchings, EoLC Lead, North Hampshire CCG
End of Life Care Strategy: Fourth Annual Report
12
The Mandate, NHS Outcomes Framework and Commissioning
Outcomes Framework
The NHS Commissioning Board will work to a mandate set by the Department of
Health. The draft Mandate went out to consultation in July, with a deadline for
responses of 26 September. The final mandate will be published in the autumn to
come into force in April 2013.
The draft mandate sets objectives for improving outcomes and reducing inequalities
in each of the five Domains of the NHS Outcomes Framework. Domain 4 of the
Framework focuses on ensuring that people have a positive experience of care and
includes an Indicator based on the VOICES survey. This uses the views of
bereaved relatives to assess the quality of care provided to dying people and their
families across the range of care settings and conditions, as well as by geography.
The NHS Commissioning Board Authority is developing a Commissioning Outcomes
Framework which will translate the outcomes in the NHS Outcomes Framework into
measures which make sense at clinical commissioning group population level. This
will have its first iteration in 2013/14. The NHS Commissioning Board will decide
priorities for future development in discussion with partner organisations, including
how to reflect indicators for the NHS Outcomes Framework in future iterations of the
Commissioning Outcomes Framework.
The National End of Life Care Programme
Since 2008 implementation of the Strategy has been supported by the National End
of Life Care Programme (NEoLCP). The NEoLCP’s collaborative working with a
wide range of partners in the statutory, voluntary and private sectors has been a
critical factor in developing and maintaining engagement in this area, and in driving
the encouraging progress towards the Strategy’s objectives. An external evaluation
highlighted the NEoLCP as a ‘trusted hub’ and a driving force for change.
The health and care system requires nothing less than transformational change to
ensure continued provision of high quality, affordable services, free to users at the
time and point of need. Given this context – no significant growth in resources and
major system change – there needs to be an integrated, systematic approach to
large scale change. Improvement services are a critical component in the mix and a
new Improvement Body (nIB) is being established to support this. The nIB will be
formed from elements of some current improvement bodies, and this includes the
NEoLCP.
Quality, Innovation, Productivity and Prevention (QIPP)
End of life care has benefited from its status as one of the Quality, Innovation,
Productivity and Prevention (QIPP) national workstreams. This has adopted, as a
key performance indicator (KPI), the measure we have been using for the End of Life
Care Strategy itself: to improve the proportion of people who die in their usual place
End of Life Care Strategy: Fourth Annual Report
13
of residence, which combines people’s own homes and care homes. We are now
able to track this on a quarterly basis using mortality data from the Office for National
Statistics. These data show a steady improvement in this KPI at both national and
old Strategic Health Authority levels.
It is especially encouraging to note that it is not just the areas which have historically
performed well which have improved here. We are able to see similar improvements
in the South West, which had the highest baseline, and in London which had the
lowest. The continuing improvement in the South West also suggests that we have
not yet reached the ceiling: there is still headroom for even the best performers to do
better.
End of Life Care Strategy: Fourth Annual Report
14
Previous reports have illustrated full calendar year data on place of death across the
range of settings – hospital, care home, home, hospice and other. 2011 data show
the increase in deaths at home to 21.8% and in care homes to 19.4%, while hospital
deaths dropped to 51%.
Percentage of deaths by place-of-death category, England, 2008-2011.
ONS Death Registrations data
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
2008 2009 2010 2011
%
o
f
d
e
a
t
h
s
Other
Hospice
Care Home
Home
Hospital
We have been working to develop two additional KPIs to help drive and measure
improvements in both quality and productivity. KPI2, "To reduce the number of
hospital admissions of 8 days or more, which end in death. This is based on clinical
need, quality of care and individuals' preferences" is currently being piloted in five
areas to ensure that it is practical and that it does not introduce any perverse
incentives. Work on developing a third KPI has focussed on emergency admissions
in the final year of life. Analysis of the data suggests that this is a more complex
area than expected. The current intention, being tested for validity by further
analysis, is to develop a dashboard mapping emergency admission by condition so
that local commissioners can target their attention where it is most needed.
The QIPP work for end of life care has concentrated on the early part of the pathway,
identifying people who are approaching the end of life and planning their care, and
on care coordination. Key initiatives involved – Dying Matters, Find Your 1%,
Advance Care Planning, Electronic Palliative Care Coordination Systems (EPaCCS),
the Transform programme for the acute sector, VOICES and Do Not Attempt
Cardiopulmonary Resuscitation – are reported on throughout this document.
Palliative Care Funding
The Coalition agreement included a commitment to developing a per-patient funding
system for palliative care:
End of Life Care Strategy: Fourth Annual Report
15
“And so that proper support for the most sick children and adults can continue
in the setting of their choice, we will introduce a new per-patient funding system
for all hospices and providers of palliative care.”
The final report of the independent Palliative Care Funding Review in July 2011 set
out a series of recommendations to create a fair and transparent funding system for
palliative care. The Review found the current system “overly complicated, difficult to
navigate and not joined-up enough, leading to a lack of fairness and transparency for
commissioners, providers and patients. The system is focused on providers and not
patients.”
To take this work forward the Department has identified eight pilot sites, seven for
adult and one for children’s services, which between them bring together 93
separate organisations across the statutory and voluntary sectors. They will gather
the data we need on a range of patient characteristics, such as problem severity,
functional level and phase of illness, to understand the national picture for palliative
care resource use and associated costs. These data will inform the development
and refinement of a classification system categorising palliative patients according to
level of need, and attach resource use/ costs to each of the levels of need in the
classification system, which will support the tariff development.
The Social Care White Paper - Caring for our future: reforming care and
support
End of life care spans both health and social care. QIPP highlights this connection:
its emphasis on quality means providing good care where people want it, in the
community, while the focus on productivity means avoiding unnecessary hospital
stays. Both of these mean improving community-based services, including end of
life care in care homes. This is reflected in the White Paper on social care, Caring
for our future: reforming care and support, published by the Department of Health in
July, which says:
“There has also been strong support for the [Palliative Care Funding]
Review’s recommendation that ‘once a patient reaches the end of life stage,
and is put on the end of life locality register, all health and social care should
be funded by the state and be free at the point of delivery’. We think there is
much merit in providing free health and social care in a fully integrated service
at the end of life.”
The White Paper goes on to say that the Government will work with the Palliative
Care Funding pilot sites to collect the vital data and information needed to assess
this proposal, and its costs. A decision on including free social care at the end of life
in the new funding system will be informed by the evaluation of the pilots, and an
assessment of resource implications and overall affordability.
In recognition of the scale of the task in getting these issues right, the Government
has doubled its investment in the pilot sites from £1.8 million to £3.6 million to ensure
we have the information needed for implementation.
End of Life Care Strategy: Fourth Annual Report
16
Chapter 2: The Information
Revolution for people
approaching the end of life
The Information Strategy
Dying Matters
The National End of Life Care Intelligence Network and Public
Health England
Electronic Palliative Care Coordination Systems (EPaCCS)
and the Information Standard
VOICES
Equality Issues and Equality Impact Assessment
Research
“Itisgoodsomeofthesequestionsarebeingasked.”
“Iamreallypassionatethatlessonsarelearnt.”
“Iamwritingthisforallthepeoplewhoarecompletelyatthemercyofthesystemandhaveno-oneto
beanadvocateforthem.”
“Ifounditcathartictowriteitdown”.
“IamdisgustedwithXhospitalandhertreatmentthere.Ageismisrife”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
The Information Strategy
In May the Department published its information strategy - The power of information
– which sets a ten-year framework for transforming information for the NHS, public
health and social care. The focus is on improving access to information and
ensuring the support needed to use and understand it. It is about making sure that
everyone benefits equally from information about care services. It also emphasises
how health and care professionals can use connected information and new
technology to join up and improve services, to inform the decisions they make and to
help deliver safer, more integrated care.
There is a range of work going on in just these areas to implement the End of Life
Care Strategy.
Dying Matters
The Dying Matters national coalition was set up in 2009, led by the National Council
for Palliative Care, to tackle the taboo on discussing death, dying and bereavement.
Since then it has, year on year, increased its membership, reach and impact.
End of Life Care Strategy: Fourth Annual Report
17
Membership now stands at over 20,000, including charities, care homes, hospitals,
hospices, funeral directors, legal and financial organisations and major employers.
Dying Matters Awareness Week, which ran this year from 14-20 May 2012, is for
many members the focus of their activities. ComRes research for the Awareness
Week found that more than three-quarters of the public agree that if we felt more
comfortable talking about dying, death and bereavement it would be easier to have
our end of life wishes met. This will be supported by the wealth of activity during the
Week. Highlights included:
• Events and activities by Dying Matters members directly reached over
170,000 people, with investment from members amounting to £110,000 and
with over 11,000 hours of volunteer time provided.
• Extensive media coverage for Dying Matters Awareness Week, with 400
separate pieces of media coverage, including articles in six national
newspapers, including a powerful article in the Daily Telegraph by the
Archbishop of York, Dr John Sentamu, and across health and social media.
There was also substantial broadcast coverage, including on BBC Breakfast
TV, BBC Radio 4, BBC Radio 5 and across regional media.
• The Dying Matters website www.dyingmatters.org received record numbers of
visitors, with almost 100,000 page views (an increase of 230% on last year’s
awareness week) and significant increases in social media followers. Social
networking enables dialogue and direct messaging from the public and all
posts / tweets / comments are monitored providing feedback such as:
“‘My Grandmother sadly passed away last Friday. Prior to her passing I found
your website and spent some time reading through all the information on it. I
believe that this helped me to prepare for her death, and it certainly gave me
the confidence to be with her, before, during and after she had departed. I
now feel very differently about death and dying, and firmly believe that it truly
does matter how, when and where we die and it should not be hidden away
and feared”
• The range of free postcards and posters for the awareness week, focusing on
the small actions that individuals, organisations and communities can take,
proved to be a real hit with excellent feedback received. In all, over 200,000
Dying Matters promotional items were distributed in the run up to the
awareness week.
• Final Chapters, the first ever creative writing competition on end of life,
received a staggering 1,400 entries. Winning and highly commended entries,
which were read out by actors Peter Eyre and Barbara Flynn, were
announced at a highly successful event during the awareness week hosted
and supported by BT and chaired by publisher and writer Carmen Callil.
End of Life Care Strategy: Fourth Annual Report
18
Cheshire and Merseyside Community Engagement Initiative on Death, Dying
and Loss
The 2008 End of Life Care Strategy called death “the last great taboo in our society”.
The North West Clinical Pathway Group (2008) identified as one of its 11 key
recommendations “A public campaign should be established to raise awareness
about end of life care resulting in a more open conversation within society which also
engages people’s views about death and dying”. This recommendation was
mirrored in the evaluation of the Merseyside and Cheshire Cancer Network (MCCN)
Dying Matters Week in 2010.
North West Multi-Professional Education and Training Levy (MPET) monies were
identified by MCCN to engage the public at the local level and build on the work of
the Dying Matters Coalition. The plan was to work with the local hospices or end of
life care Locality Groups, with a named individual taking the lead in organising a
number of community engagement events.
This approach had broad support across the network, as it did not focus on a single
period of time, such as the national Dying Matters week, but would be continued
over weeks and months and would work beyond health services. To support the
hospice/locality lead(s) the following was planned and delivered.
Mary Mathieson, Director for Conversations for Life, held a workshop for all leads,
explaining the concept of community engagement and how to go about identifying
and engaging with up to 30 community leaders. She then held a one day event local
to each area, with the hospice/locality lead and the community leaders, which was
followed up with a further half day session with the same group entitled “moving to
action”, helped the group to plan what they did over the following weeks and months.
There were funds to support the local action plans and there was support from a
media company, secured and funded through the Network to work in a bespoke way
with each local team. Each lead was asked to submit their community engagement
plan, with a progress report, including how funding had been committed part way
through and at the end of the year.
Since 2011, six areas have held community engagement events (Wirral, Southport,
Aintree and Halton, Central and South Liverpool and Western Cheshire). These
events have been well received. The various organisations have established
community groups to discuss the topic of death, dying and loss in their own
communities and follow up meetings have occurred in autumn 2011 and in 2012.
These groups are either linked to current groups, for example, LINKs (local
involvement networks) in Halton or new Groups, The Bucket Group, in Central and
South Liverpool, and Dying to Know Group, supported by Voluntary and Community
Action Wirral, and Western Cheshire Sub Group – Living Well Dying Well. Other
organisations across the network have become involved e.g. The Salvation Army,
local sixth form colleges etc. and are supporting the local end of life care teams to
drive this forward.
End of Life Care Strategy: Fourth Annual Report
19
An evaluation of this initiative is being undertaken to analyse the changes as a
consequence of this piece of work. The next stage is to look at the future
sustainability of the groups and to link to the public health agenda.
Elaine Owen, End of Life Care Service Improvement Lead for Acute
and Specialist Services. [email protected]
• The launch of the Small Actions, Big Difference photography exhibition
featuring work by the photographer Nadia Bettega, showing the differences
that can be made at the end of life. Following a highly successful launch and
national media coverage, this is now touring the country and is available to
Dying Matters members.
• The Awareness Week launched two new short films which are available to
view at www.dyingmatters.org. Last Laugh, produced by Picturewise
Productions with support from Dying Matters Bolton, St Anne’s Hospice in
Manchester and Bolton Hospice, features Alexei Sayle exploring the value of
humour with terminally ill people, whilst I didn’t want that examines what
happens if you don’t make your end of life wishes known.
• All Dying Matters materials have been produced in partnership with people
with personal experience to ensure the language and tone resonates with the
public.
• A new leaflet entitled Time to Talk focusing on opening up conversations with
people with dementia (produced on request of GPs), was launched in
Parliament by the Minister for Care Services, Paul Burstow MP, APPG Chair,
Fabian Hamilton MP, National Clinical Director for Cancer and End of Life
Care, Professor Sir Mike Richards, and Dying Matters Chairman, Professor
Mayur Lakhani.
• Dying Matters’ 30 minute film Dying to Know was accepted to be screened at
the Cannes Film Festival – there was so much interest the film was screened
twice with people sitting on the floor due to limited seating. There has been
significant international interest from people considering bulk orders and
screening the film on TV as well as replicating the Dying Matters model in
various countries.
• The GP training project continues to go from strength to strength with
evaluations continuing to show significant improvements in the confidence of
GPs to initiate and undertake end of life care conversations with patients. The
training DVD has been particularly successful with work already beginning on
the second in the series focusing on patients with dementia. Positive
comments have been considerable. One especially striking story comes from
a GP who appeared in the DVD:
“The scenario I used was from a real patient called Ronald James Smith. He
died suddenly at home today with his PPC/DNAR on the coffee table and wife
next to him. I told his wife about us making this film based on the
conversations we had had. She was very moved (and so was I actually) that
End of Life Care Strategy: Fourth Annual Report
20
he may have a lasting legacy. Can my part of the DVD be dedicated to the
memory of Ronald James Smith (1929-2012)? What we did and said worked
well for him.”
Dr Nightingale then wrote: ‘‘Mrs. Smith has given some money to me and I
would like to buy 13 copies of the DVD for all the GP practices in our
consortium to have a copy.”
• The train the facilitator programme got underway in September 2012
supported by the National End of Life Care Programme (NEoLCP) and will
allow those who have undertaken the training to be trained in facilitation to
cascade the training further in their own localities.
The National End of Life Care Intelligence Network (NEoLCIN)
The NEoLCIN was set up to address the lack of routine data, information and
intelligence on end of life care. It aims to improve the collection and analysis of
nationally available information, providing significant insight into end of life care in
order to drive improvements in the quality and productivity of services.
Over the last year, the NEoLCIN has produced a range of reports covering specific
conditions and topics such as equality. This report summarises the highlights.
The NEoLCIN’s partners at Cicely Saunders International produced the report Local
Preferences and Place of Death in Regions within England 2010. This compares
people's preferences for place of death with actual place of death, as recorded by
Office for National Statistics (ONS) mortality data.
The NEoLCIN’s key partners at the South West Public Health Observatory produced
a report on Deprivation and Death: Variation in place and cause of death. This
report looks at patterns of death in England by socioeconomic deprivation. It
examines the interaction between deprivation, sex and age group, and place and
underlying cause of death and improves our understanding of deprivation as a key
factor influencing end of life care, and adds to the evidence base for those making
decisions about the provision and commissioning of care and aiming to reduce
inequalities.
The report on Deaths from Liver Disease hit the attention of the media when it was
published in March. This report presents the latest data on place of death for those
with liver disease and shows how this varies with sex, age, region and
socioeconomic deprivation. It included some important public health messages:
• Liver disease causes approximately 2% of all deaths but the number of
people who die from liver disease in England is rising;
• 90% of people who die from liver disease are under 70 years with more than 1
in 10 deaths of people in their 40s. More men than women die from the
disease;
• Alcohol-related liver disease accounts for 37% of all liver disease deaths
which is more prevalent in more deprived areas.
End of Life Care Strategy: Fourth Annual Report
21
The work of NEoLCIN is led by a group of stakeholders, bringing together the
various holders of information, analysts, national charities, researchers and key
users of this intelligence in order to benefit from their wide experiences and
expertise. The What we know now that we didn’t know a year ago report published
in May highlights the range of intelligence that we have gained over the last year
through the work of the network and its partners. It pulls together key findings from
studies and surveys to provide an insight into the pattern of death and dying in
England which can be used as a lever for change.
The NEoLCIN website houses a series of locality profiles which commissioners and
providers can use to inform their service planning and to compare themselves with
their peers. In summer 2012 the profiles were updated with new profiles for each
PCT in England which can be viewed as a table chart or map using InstantAtlas
interactive mapping tool or downloaded as a PDF for each PCT in England. A
second set of profiles has also been produced for Local Authorities which for the first
time include a set of social care indicators. The profiles present over 40 indicators
relating to end of life care and allow easy comparison of a locality’s position to
England and the current SHA. The mapping tool also enables comparison of one
local authority or PCT with another.
Eight sites across England were selected as early adopters for the end of life care
modelling tools. This suite of three modelling tools the Cohort model, the Yorkshire
& Humber Co-Design Model and the Workforce Functional Analysis model and are
designed to support end of life care commissioning and planning through analytical
modelling to provide better understanding of local need for services and an indication
of workforce and cost implications. The early adopters have been involved in testing
the tools, applying local data and statistics to the models, learning about the tools
and their implementation and then putting them into action. Case studies from the
early adopters are available on the website. The tools and work books have now
been updated and are all available on the website with a comprehensive range of
support resources available for organisations interested in using these approaches
to better understand their needs and to project the impact of change.
From the autumn NEoLCIN will have access to new linked data sets of ONS
mortality data and hospital activity which will give more up to date information and
will allow it to better track delivery of the End of Life Care Strategy.
For the future, from April 2013 the NEoLCIN will come under the umbrella of Public
Health England to ensure that it continues to build on the solid foundations it has
established.
Electronic Palliative Care Coordination Systems (EPaCCS)
EPaCCS is the term now in use for the locality registers for end of life care described
in the End of Life Care Strategy. EPaCCS’ main purpose is to facilitate coordination
of care for individuals approaching the end of life. Chapter 4 of this report provides
more detail. They are not primarily data capture systems but a valuable spin-off
benefit is their ability to track progress locally. The more EPaCCS systems are
End of Life Care Strategy: Fourth Annual Report
22
adopted, the more useful these data will be for comparisons between localities and
against national data.
The NEoLCP and the Department developed a national information standard to
underpin EPaCCS (End of Life Care Co-ordination: core content
1
), which has been
approved by the Information Standards Board for Health and Social Care. The
standard was published on 20
th
March 2012 and specifies a core record content to
support end of life care coordination systems, which facilitates the consistent
recording of information by health and social care agencies. Reporting functions in
the systems, where integrated, allows them to see, for example, how many people
expressed a preference for a place of care, how many achieved it, and, where there
was a difference, why that was the case.
Established EPaCCS are beginning to show these outcomes. While sample sizes
are still small, some sites report achieving Preferred Place of Death for 70% to 80%
of those on a register. Deaths in hospital have more than halved for others.
VOICES
This year we have carried out the first ever national VOICES survey of bereaved
people to establish a systematic record of the quality of care experienced by people
in their final three months of life. This followed a successful pilot carried out in
2010/11 in two PCT areas, Isle of Wight and East Berkshire. The Office for National
Statistics (ONS) carried out the survey and undertook the analysis. As well as the
quantitative data from the surveys we received a wealth of freetext responses.
Those are currently being anonymised so that they too can be used for research into
this topic, and are the source of the quotations used at the heads of the Chapters
throughout this report.
The questionnaire was sent out to 48,766 people who had registered a death 4 to 11
months earlier. A total of 22,292 people responded, giving a response rate of 45.7%
which is considered excellent for a survey of this type.
Overall quality of care in the last three months of life was rated as outstanding or
excellent by 43% of respondents, good by 33%, fair by 14% and poor by 10%.
There was significant variation according to the setting for care at death. Where the
death occurred in a hospice, 59% rated care “outstanding/excellent”, home 54%,
care home 51% and hospital 33%. Cancer patients and people aged under 65 were
most likely to receive outstanding/excellent care.
There was also significant variation in the reporting of which staff treated the person
with dignity and respect. This was highest for staff in hospices (87% “all of the time”
for hospice doctors and 80% for hospice nurses); followed by district/community
1
End of Life Care Co-ordination: core content.http://www.endoflifecareforadults.nhs.uk/strategy/strategy/coordination-of-care/end-
of-life-care-information-standard
End of Life Care Strategy: Fourth Annual Report
23
nurses (79%); GPs (72%); care home staff (61%); hospital doctors (57%) and
hospital nurses (48%).
The size of the sample determines how detailed the analysis can be.
Geographically, they can be examined down to PCT cluster level. By condition, the
analysis has split responses between cancer, CVD and other but we have been able
to look at additional detail where the numbers have permitted. For example, around
one fifth of patients had dementia or senility mentioned on their death certificate.
This means that we can say that respondents for patients where dementia was
mentioned were more likely to rate the overall quality of care as outstanding or
excellent (46%) compared with those without (42%). This is especially interesting
when compared to the overall rating for care in care homes, since more than half of
deaths in care homes had dementia mentioned (56%).
ONS will be running the second VOICES survey along the same lines as the first
one. We shall be able to combine the two sets of data to look at the results for
smaller areas, which should allow for analysis to CCG level. VOICES is also the
basis for an Indicator in Domain 4 of the NHS Outcomes Framework. This will focus
on improving the experience of care for people at the end of their lives and will be
based on the overarching question in the survey on quality of care in the last three
months, supplemented by the summary questions for care in the different settings:
Overarching question:
- Overall, and taking all services into account, how would you rate his care in
the last three months of life?
The supplementary questions cover:
- Overall perception of the care s/he got [at home] from the GP in the last three
months of his life
- Overall perception of the care that s/he got from the staff in the hospice
- Overall perception of the care that s/he got from the care home in the last
three months of his life
- Overall perception of the care that s/he got from the staff in the hospital on
that [last] admission (responding for both doctors and nurses)
The findings at PCT cluster level show significant variations which are already
prompting local services to ask what lies behind their results so far.
End of Life Care Strategy: Fourth Annual Report
24
National Bereavement Survey, 2011
Table 29: Summary table of benchmark ratings for PCT Clusters across 11 key
questions
NORTHEAST A1 A2 A3 A4 A5 A6 A7 A8 A9 A10 A11
DurhamandDarlington
NorthofTyne
SouthofTyneandWear
Tees
NORTHWEST
Cheshire,WarringtonandWirral
Cumbria
GreaterManchester
Merseyside
Pan-Lancashire
YORKSHIRE&THEHUMBER
BradfordandAiredale
Humber
Leeds
NorthYorkshire&York
SouthYorkshire
WestYorkshire
EASTMIDLANDS
Derbyshire
Leicestershire
Lincolnshire
MiltonKeynesandNorthamptonshire
Nottingham
WESTMIDLANDS
Arden
Birmingham
BlackCountry
Staffordshire
WestMercia
EASTOFENGLAND
BedfordshireandLuton
CambridgeshireandPeterborough
Hertfordshire
Norfolk,GreatYarmouthandWaveney
NorthEssex
SouthEssex
Suffolk
LONDON
InnerNorthEastLondon
NorthCentralLondon
NorthWestLondon
OuterNorthEastLondon
SouthEastLondon
SouthWestLondon
SOUTHEASTCOAST
KentandMedway
Surrey
Sussex
SOUTHCENTRAL
Berkshire
BuckinghamshireandOxfordshire
Southampton,Hants,IsleofWight&Portsmouth
SOUTHWEST
Bath&NorthEastSomersetandWiltshire
BournemouthandPooleandDorset
Bristol,NorthSomerset&SouthGloucestershire
Devon,TorbayandPlymouth
SwindonandGloucestershire
Somerset
CornwallandIslesofScilly
End of Life Care Strategy: Fourth Annual Report
25
A1.OverallqualityofcareacrossallservicesbyPCTClusters A6.Painmanagementinthelasttwodays
A2.Co-ordinationofcarewhilepatientwasat
home
A7.Patientinvolvedindecisionsre:careasmuchas
wanted
A3.Co-ordinationofcare:hospitalwithGP/communityservices A8.Patientexpressedpreferencewherewouldliketodie
A4.Dignity&Respectshownbydoctorsallofthetimelast2
days
A9.Respondentconsideredpatientdiedintherightplace
A5.Dignity&Respectshownbynursesallofthetimelast2days A10.Supportforcarerswhilepatientathome
A11.SupportforcarersabletodiscussworrieswithGP
The freetext adds greatly to the richness of the quantitative data. A high proportion
of responses included substantial additional comments. These were spread across
both positives and negatives: where someone highlighted poor care, it was
frequently in contrast to good care received in another setting or from other staff.
The longest single response, which included copies of letters and press cuttings, ran
to 51 pages and was about an excellent experience of care.
The full report on the findings, published in July, is available athttp://www.dh.gov.uk/health/2012/07/voices/
Equality Issues
The End of Life Care Strategy recognises that inequalities often exist in the care that
different groups of people receive at the end of life. Whilst these inequalities have
been most marked between cancer and non-cancer diagnoses, other groups, such
as older people, people with disabilities and people from different cultural and
religious groups, often face issues of inequality.
A comprehensive Equality Impact Assessment (EqIA) was published alongside the
Strategy in 2008. This recognised the need to address a range of equality and
diversity concerns and set out a series of action points.
Every year we publish alongside the Strategy’s Annual Report a progress report
against the action points set out in the 2008 EqIA. These progress reports should be
read as a continuing narrative of developments and progress made since 2008. The
reports show that much has been achieved but also show that there is more still to
be done.
Key progress since the 2011 Annual Report includes:
• The NEoLCP has produced Planning your future care: a guide in six
languages: Arabic, Punjabi, Urdu, Polish, Bengali, Chinese;
• The NEoLCP has produced The route to success in end of life care -
achieving quality for lesbian, gay, bisexual and transgender people;
• The National End of Life Care Intelligence Network has produced local PCT
and LA profiles, which include over 40 indicators relating to population,
deaths, place of death and cause of death and provide vital data for
commissioners of services; and,
• The National Institute for Health and Clinical Excellence (NICE) Quality
Standard for end of life care for adults stresses the importance of ensuring
that treatment and care, and the information given about it, should be
End of Life Care Strategy: Fourth Annual Report
26
culturally appropriate and accessible to people with additional needs such as
physical, cognitive, sensory or learning disabilities.
The full progress report for 2012 is published alongside this Annual Report on t he
Department’s website.
St Nicholas Hospice Care – The Stephen Project - Improving End of Life Care
for homeless people in a rural county and beyond.
Introduction: This Burdett Trust funded initiative explored the local and national
provision of end of life care for the homeless. On average a homeless person dies
30 years before someone who has a home; the death arises from social situations
rather than the most common life shortening diseases. 6.9% of the local population
are statutorily homeless (and rising) but there is no indication that 6.9% of hospice
care supports homeless people. St Mungo’s and Marie Curie Cancer Care have
considered urban homelessness; we sought to explore the impact of rural
homelessness.
Method: We consulted and continue to work with homelessness services and their
clients, including those in conurbations, faith based, the Big Issue, night shelters,
residential units and young people supported housing units, building bridges with
clinicians involved in the care of homeless people with mental health and addiction
problems, and those with learning disabilities.
Project findings: One of the significant causes of persistent homelessness is often
unaddressed grief arising from multiple traumatic losses and deaths.
Why, where and how homeless people die was a revelation. We supported an
organization who knew their client would only accept death on a park bench; the skill
lies in adapting the principles of a good death to his preferred place of death. The
national initiative to promote ‘admission avoidance’ at point of dying is unachievable
for someone who is or chooses to be homeless; a challenge to clinicians and
commissioners of services!
Social care staff within homeless services are extraordinarily eager to learn more
about bereavement and end of life care in order to support their clients. Our work
has resulted in local services being linked into our education sessions and thereby
promoting our hospice as ‘open’ to care and support on homeless peoples terms
whenever possible.
Recommendations: Albeit findings to date are anecdotal and not statistically
determined, nevertheless ideas are tangible. In offering bereavement support to
vulnerable young people outwith ‘traditional hospice care’ homelessness and self-
destructive behaviours might be reduced. Hospice has a role to ‘work with’ other
agencies to meet grief and ‘death’ issues in a new way.
The challenge is to deconstruct the current diagnosis/illness led hospice-care model,
to compassionate, community, health promotion addressing the social experience of
death in its various forms.
End of Life Care Strategy: Fourth Annual Report
27
Hospices have always filled ‘gaps’. This project has highlighted how contemporary
models of end of life care need revision in order to support homeless people and the
agencies which strive to support them. It is further work for hospices nationally to
provide services equitably, to identify marginalized groups and ‘hidden’ need.
Jane Carpenter, Senior Registered Nurse,
Jackie Saunders, Clinical Services Director
St Nicholas Hospice Care, Suffolk
Housing
The NEoLCP has a history of partnership working to take forward end of life care in a
range of settings. Most recently they have worked with the Housing Learning and
Improvement Network (Housing LIN) to produce a resource pack for extra care
housing staff.
End of life care in extra care housing: a learning resource pack provides practical
information and advice for managers and support staff working in extra care housing
schemes. It covers a range of issues relating to the care of residents with a life-
limiting or progressive condition. The topics range from initial conversations and
care planning through to the things staff might be expected to do after a death. As
well as case studies and ‘top tips’, the pack includes template local directories of key
contacts.
Research
One of the functions of the National End of Life Care Intelligence Network is to
provide easy access to the latest data, research, analysis and statistics. Its website
acts as a gateway for access to good quality research. Its primary function, to
improve the collection and analysis of information related to the quality, volume and
costs of care provided by the NHS, social services and the third sector, to adults
approaching the end of life, itself is a valuable support to those undertaking research
in this area.
End of Life Care Strategy: Fourth Annual Report
28
Chapter 3: Improving outcomes
for people approaching the end of
life: identification and care
planning
Find Your 1%
AMBER Care Bundle
Advance Care Planning
Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)
Choice
The Prime Minister’s Dementia Challenge
Cancer survivorship
Social care
“ServicesarelackinginthisareaandifIcouldhaveonewish,itwouldbetoimprovethe‘continued
careinthehome’service”.
“Respitecaretolive-inisverydifficulttoobtain.Withthebestwillintheworld,no-onecanbe
expectedtocareforsomeone24/7withoutabreak”.
“Hedidn’tlikegoingtothehospitalandwantedtogetbacktohisflatassoonaspossible”.
“Theresidentialcarehomeprovidedwonderfulcare.Myfather..waslookedafterwithdignityand
love.(Thestaff)managedtohelphimenhancehislifewithinterestsandactivities”.
“Thefasttrackprovisionofequipment,bedandairmattresshappenedwithinhourstoallowMumto
dieinherpreferredplaceofcare”.
“Shemayhavediedinhospitalandthiswasnotwhatshewanted.Somepeoplemightnothavethe
fightinthemtogetthemhome.Healthandsafetycanbeoverthetop.Ijusthopeno-oneelseinthis
situationgoesthroughthiskindofstress”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
The End of Life Care Strategy highlighted the challenges of identifying people who
are approaching the end of life. Unless this can be done it is not possible to plan
with and for these people, to explore their choices and options and to help make
them a reality. This can involve a range of staff in both the NHS and social care.
Hill View Surgery – Gold Standards Framework (GSF)
Hill View Surgery is a small GP practice of around 3000 patients and 1.5 FTE GPs
and is part of the Newark and Sherwood CCG in Nottinghamshire. The surgery
team are committed to improving end of life care services for their patients and have
put in place a number of initiatives to ensure that communication about a patient who
is near the end of life is shared across the whole team involved in their care.
They hold GSF meetings every three months which include all the GP practice staff,
District Nurses, Macmillan Nurses and any other staff needing to be involved. They
End of Life Care Strategy: Fourth Annual Report
29
have a check list to help them update records and identify patients’ needs as well as
looking at needs of the carers who are not necessarily resident with the patient.
When someone has passed away the team look at how they managed the care and
reflect on any improvements that could be made for the future. Bereavement
counselling is also something that is offered and if someone has a complaint around
the care either before or after the death then they are invited in to discuss the issues,
although sometimes it is just a reaction to the death and an inability to cope rather
than a failure in the system.
Regular handover meetings are also held with the full team to enable smooth
transition of care during staff changeovers. One of the GPs has recently undertaken
a Diploma in Palliative Care to address a shortfall in knowledge on anticipatory
medicines and syringe driver medications within the practice. All staff including
administration and reception staff are aware of Liverpool Care Pathway and how to
manage conversations around the associated care and outcomes.
Only one death has not occurred in the patient’s preferred place since adopting GSF
and this was mainly due to it occurring during an out of hours episode with the family
panicking as the end stage was developing very quickly. The practice is also
undertaking work to help their dementia patients make decisions on their wishes and
preferences whilst they are still capable and also ensure that the family is aware of
the decisions and wishes expressed. The practice is currently using SystmOne and
Summary Care Records but will start to use the end of life care template recently
received.
The surgery team are very proud of their achievements and the end of life care they
are able to give to their patients and carers.
Mandy Brown – Surgery Manager
Find Your 1%
The ‘Find your 1%’ mobilisation campaign, led by the National End of Life Care
Programme (NEoLCP), has been actively engaging with clinicians in collaboration
with Dying Matters, Doctors.Net.UK, the Royal College of General Practitioners and
other key partners to encourage clinicians to commit to identifying the 1% of people
on their list who might be in their last year of life, to work with those individuals to
plan their care, and to encourage colleagues to do the same.
The campaign has seen over 2900 clinicians sign up so far and a post campaign
survey conducted with 600 GPs who engaged with the campaign showed the
following improvements –
End of Life Care Strategy: Fourth Annual Report
30
End of
March
2011
End of
March
2012
Number of GPs with an EOLC register
221 333
Number of patients on an EOLC register (excluding
outliers)
4,242 7,723
Patients with primary diagnoses other than cancer on
EOLC register (Excluding outliers)
959 2,534
Number of patients with Advance Care Planning
1,652 3,531
Number of GPs across their practices said to have
increased EOLC activity
1,905
Overall among GPs who have interacted with the Find your 1% campaign:
• Two in five have increased the number of patients listed on their end of life care
(EoLC) register;
• Although cancer patients remain the largest group on EoLC registers, the number of
patients with other primary diagnoses has increased (up from 29% in 2011 to 39% at
the end of March 2012);
• The percentage of patients achieving preferred place of care or preferred place of
death has increased, as have the number of patients with advance care plans;
• 19% of those interviewed indicated that their practice had at least one patient on an
EoLC register in March 2012 where there had been none in March 2012;
• 20% had increased the number of patients on their pre-existing EoLC register.
Campaign activity is now focusing on supporting and facilitating local calls to actions
with active participation already underway in London, South Central, South of
England and the North West.
For more information seehttp://www.dyingmatters.org/gp
NHS Midlands & East – East of England End of Life Care GP Practice
Education Programme
To meet the requirements of the Strategic Vision ‘Towards the Best Together (2008)’
requires a step change in the ability of staff to deliver palliative and end of life care.
About 70% of people in the East of England express a wish to die in a place of their
choice. The East of England End of Life Care GP Practice Education Programme
aims to facilitate this by enabling GP practice staff (clinical and non clinical staff) to
have more confidence and skills through end of life education and resources. The
project will run over two years (ending in 2014) and is facilitated by the Mount
Vernon, Anglia and Essex Cancer Networks.
End of Life Care Strategy: Fourth Annual Report
31
During this time all GP practices (including Out of Hours services) across the East of
England will be invited to identify and discuss their end of life care training
requirements with objectives to:
• provide facilitation to enable staff to improve their skills, behaviours and
knowledge with respect to caring for people who require palliative and end of life
care;
• improve communication between GP practices, care homes and other end of life
care providers;
• decrease the numbers of people/residents being admitted inappropriately from
their homes/care homes to the acute hospital services;
• increase the accuracy and quality of the GPs’ end of life register.
With the support of experienced facilitators, practice staff will have opportunity to
discuss and review their current end of life care provision. This will help identify
gaps in care and systems, highlight skills required and negotiate/access appropriate
education and learning opportunities. Training will be varied and flexible to meet the
needs of clinicians and practice staff and will contribute towards continuous
professional development evidence of learning.
The GP facilitator will then endeavour to support the Practice in embedding their
enhanced skills and confidence to deliver an optimal service, through advanced
communication, enhanced knowledge and excellence in clinical skills, for the benefit
of all patients affected by end of life care issues.
Vanessa Convey, Palliative and End of Life Care Education & Training Programme
Manager, East of England Multi-Professional Deanery
[email protected]
AMBER Care Bundle
The AMBER Care Bundle was developed at Guy’s and St Thomas’ Hospital to
support teams in identifying and responding to someone’s end of life care needs
when their recovery is uncertain. It is designed to enable treatment to occur
alongside palliative care.
The tool incorporates and is supported by a package of interventions which includes
staff training and development required to embed the tool in daily ward and
operational practice.
The AMBER acronym stands for:
• Assessment
• Management
• Best practice
• Engagement of individuals and carers
• For people whose Recovery is uncertain
End of Life Care Strategy: Fourth Annual Report
32
Emerging evidence suggests that using the AMBER care bundle improves decision-
making. It also has a positive impact on multi-professional team communication and
working and increases nurses’ confidence about when to approach medical
colleagues to discuss treatment plans. In addition people are treated with greater
dignity and respect and there is greater clarity around preferences and how they can
be achieved.
Guy’s and St Thomas’ Foundation Trust
Guy’s and St Thomas’ Foundation Trust (GSTT) has been implementing the AMBER
care bundle in around half of its wards since last August.
During this time over 600 patients have been identified as being at risk of dying in
the next one to two months or facing an uncertain recovery and have gone through
the AMBER process. Of patients cared for using the AMBER care bundle in 2011,
55% were discharged home to die while the rest stayed in hospital, often because
they chose to rather than because they were too ill to transfer. Latest available
figures suggest 70% of those who died achieved their preferred place of death.
While the majority of those dying in hospital died within a fortnight of being placed on
AMBER, most of those who returned home died within 100 days.
A possible indication of the wider effect of the AMBER care bundle is a reduction in
the overall hospital death rate. This may be linked to increased numbers of patients
being fast-tracked home to allow them to die there if this is their wish.
Teamwork has improved on the wards that use the care bundle.
There are plans to roll the tool out to most of the hospital’s remaining wards. It is
also planned to increase its use at neighbouring King’s College Hospital as well as
piloting it in surrounding community areas.
The AMBER care bundle has been identified as a key enabler in the Transform
Programme for acute hospitals. The team at Guy’s & St Thomas’ is working with
trusts across the country to support implementation.
More information on the AMBER Care Bundle can be found on the GSTT website.
../../dhuserdfs/nw020/TIng/Data/notes99D109/www.guysandstthomas.nhs.uk/service
s/ambercare/amber-carebundle.aspx
Advance Care Planning (ACP)
Advance care planning is a voluntary process of discussion and review with the aim
of helping someone who has the capacity to indicate what their preferences and
wishes are for future care.
If the individual wishes, they can record choices about their care and treatment and
an advance decision to refuse a treatment in specific circumstances. These choices
End of Life Care Strategy: Fourth Annual Report
33
can then be referred to by those responsible for care and treatment if, as the illness
progresses, the individual loses capacity to make decisions for themselves.
Advance care planning involves a series of conversations in which a person’s wishes
are explored, identified and then recorded. Policies should be agreed locally about
where care planning documentation should be kept, including any formalised
outcomes. There should also be systems in place to enable health and social care
professionals – including out of hours providers and ambulance services - involved
with the individual to share information.
Advance Care Planning and the Information Sharing Process in Knowsley
Advance care planning (ACP) in Knowsley uses the Preferred Place for Care (PPC),
a patient-held document. To be effective the information contained in the PPC
needs to be shared with all the staff who are involved in the patient’s care. A
Notification document was developed to ensure that this process takes place as
efficiently as possible. Patients are made aware of the importance of the Notification
Form to support the PPC document to help them to achieve their wishes and
preferences for the care at the end of their lives.
A project was set up to take this forward, with three aims:
• to support staff to start the conversation about end of life choices with patients
and record these in the PPC document;
• to set up a system that would share the information contained in the PPC with
relevant professionals, to ensure choices were respected; and,
• to use the information anonymously to audit the reasons why some patients do
not die in their place of choice.
Letters were sent to every GP Practice informing them of the project and what to do
with the information supplied on the Notification Form. GP Out Of Hours (OOHs)
and North West Ambulance Service (NWAS) agreed to input onto their IT systems
and use the information. Two open days were held for acute and community staff; a
total of 88 staff attended.
More than 200 staff across all sectors attended intensive training sessions on
‘starting the conversation’, the PPC document and the Notification Form, a further 34
attending communication skills training. Information from the Notification Forms was
anonymously collected onto a database, as well as being shared with appropriate
urgent care services and primary health care teams identified on the form, e.g. GP’s,
District Nurses, Community Matrons, Specialist Nursing Teams, Community
Macmillan Nurses, hospice and social care, including OOHs and NWAS. It enables
staff to plan ahead; if they are aware of patients’ preferences they can put systems in
place to support them to achieve their wishes.
This has continued to snowball, with more staff continuing to recognize the value and
importance of ACP. 400 have been completed and the success rate is amazing to
see, with 87.1% of people achieving their PPC.
End of Life Care Strategy: Fourth Annual Report
34
Another huge achievement is the number of patients now involved in ACP who had
life limiting conditions other than cancer. 73% of all the notifications received are
non-cancer, although traditionally these patients do not always receive the same
consideration in achieving their preferences for end of life care as people with cancer
do.
[email protected]
There is now a range of useful ACP support tools available to both health and social
care professionals, including:
• Holistic common assessment of supportive and palliative care needs for
adults requiring end of life care
• Capacity, care planning and advance care planning in life-limiting illness: a
guide for health and social care staff
• Planning for your future care
• Preferred priorities for care documentation
• The differences between general care planning and decisions made in
advance
• Concise Guidance to Good Practice: Advance Care Planning (RCP, 2009).
• Thinking and planning ahead: learning from others
• e-ELCA End of Life Care for All e-learning, which includes modules on ACP
• It All ADSE Up (Ask, Document, Sharing, Evaluating plan) was launched at
the conference In the End Care Counts on 16 October 2012.
Blackpool Teaching Hospitals Foundation Trust
In recent months Blackpool Teaching Hospitals Foundation Trust, one of the
participants in the Transform programme, has been running special half-day training
sessions for its staff on communications as part of its plan to introduce advance care
planning (ACP) for all patients approaching the end of life.
The trust’s end of life care team found that one of the main stumbling blocks to ACP
was staff’s apprehension about entering into what they saw as difficult
conversations.
As a result the trust identified funding to train a cohort of six facilitators who are now
starting a rolling programme of three-hour sessions on communications skills which
will be made available to all staff within the organisation. So far 30 staff a month are
going through the training but it is hoped shortly to expand the number of facilitators
and therefore double the numbers receiving the training each month.
The initiative is part of a wider end of life care strategy across the entire health
economy aimed at ensuring that people are cared for and die where they wish. The
next stage of this process will be the gradual introduction of the Preferred Place for
Care within selected wards as well as making use of the AMBER care bundle.
The current policy began in 2009 when the trust carried out an audit of deaths within
its hospitals. It found that of 60 deaths, 45 had been expected where the patient
expressed a wish to return home but for one reason or another had been unable to.
End of Life Care Strategy: Fourth Annual Report
35
A number of changes have been made to improve the rapid discharge pathway,
including making use of a private ambulance that can be ready within a couple of
hours, taking a more flexible approach to equipment and ensuring that prescriptions
are available within half an hour.
The hospitals are now discharging around 20 patients per month within 24 hours and
one or two a week within four hours. The numbers appear to be growing.
The end of life care team is also working closely with other parts of primary and
secondary care as well as local hospices to ensure that all aspects of care are co-
ordinated and that, for instance, people aren’t admitted to hospital unnecessarily in
the first place.
Although it is difficult to find hard measures of progress in such a complex field, the
response of patients and families to the new policy has been very positive. In one
example, a patient who was being discharged home said her dying wish was to see
the sea one last time. “So the ambulance took her home but on the way they pulled
up at the promenade and the lady was able to sit looking at the sea for 30 minutes
before going home.”
DNACPR
SHAs have worked hard to develop Do Not Attempt Cardiopulmonary Resuscitation
(DNACPR) policies which can be used consistently across their areas.
Deciding right
Deciding right is England’s first integrated policy on making care decisions in
advance and covers three key national frameworks: the 2005 Mental Capacity Act;
the 2007 BMA/RC/RCN joint statement on cardiopulmonary resuscitation decisions;
and the 2011 NHS guidance on advance care planning. Its key components are
C hoice and capacity The right of individuals to choose their care preferences,
either now should they lose capacity in the future, or have the right choices made on
their behalf if they do not have capacity
A greement The right choice comes from shared decision making which is a
partnership between two experts, the individual and the professional
R ight documents Having the same documents in every care setting ensures that
decisions are centred on the individual, not the organisation
E ducation The right for patients and professionals to have the resources to
understand and use Deciding right.
Developed by a team led by Dr Claud Regnard for NHS North East and championed
by the end of life Clinical Innovation Team, Deciding right includes provision for
shared, region-wide documents so that a patient’s decision, once made, is respected
wherever they receive care, and the process of evolving decision-making (including
changing one’s mind) is respected. Documents include:
. a Regional Advance Decision to Refuse Treatment (ADRT)
End of Life Care Strategy: Fourth Annual Report
36
. a Regional Do Not Attempt CPR order (DNACPR)
. a Regional Emergency Health Care Plan
These and other resources are available on www.theclinicalnetwork.org (click on
Deciding right signpost at the foot of the homepage).
Deciding right so far
Deciding right is being widely disseminated to all health and social care
organisations in the north east and has been adopted by all NHS trusts. Most trusts
have already started implementing the initiative and some have already made the
switch to the new regional DNACPR form. Deciding right is included in the palliative
care register information pack that has gone to all GPs. The North East Ambulance
service has been part of the development process and by April 2013 they will only
accept the new regional forms.
Elizabeth Kendrick, GPwSI Older people and Chair End of Life Clinical Innovation
Team NHS North East
Claud Regnard, consultant in palliative care medicine, St. Oswald’s Hospice,
Newcastle upon Tyne
In response to continuing demand for clarification in this extremely sensitive area the
NEoLCP has supported Professor Rob George, clinical end of life care lead for
London and a palliative care specialist, to develop a web-based resource for
DNACPR. This was published on 27 September.
Leeds Health and Social Care implementation of regional DNACPR form
The health and social care economy in Leeds began implementation of the newly
developed regional DNACPR form in August 2011 as part of the wider project to
implement across the whole of the Yorkshire and Humber region.
The project was supported by the NHS Yorkshire and Humber Strategic Health
Authority, the overall aim being to establish a common DNACPR form that would
facilitate the documentation and communication of DNACPR decisions across all
care settings on transfer between them.
As the biggest city within the Yorkshire and Humber region with a population close to
800,000 and housing two of the largest teaching hospitals in Europe, Leeds were
aware of the challenge ahead to implement the form.
A local, high level Leeds DNACPR Task & Finish Group was established to plan and
oversee the introduction, implementation and embedding of the form. The Leeds
health and social care economy, which crucially ensured senior representation from
the acute, community, mental health and commissioning trusts, the two hospices,
adult social care and Yorkshire Ambulance Service, worked collaboratively. Citywide
collaborative working has been key to the success of implementation.
The group developed and adhered to a communication and education plan and as a
result, implementation has been relatively smooth with some excellent examples of
End of Life Care Strategy: Fourth Annual Report
37
the impact in practice, not least a Senior Sister within A&E at one of the acute
hospitals reporting increasing numbers of patients arriving in A&E with the form.
Post implementation audits have broadly demonstrated increasing improvement in
the completion on the forms but underlined the need for ongoing education and
training particularly for medical staff and specifically around communication skills.
Finally, a READ code has been agreed with SystmOne for the DNACPR form which,
as the form is recognised by all involved, has improved communication between
healthcare professionals across organisations regarding a patients’ DNACPR status.
There may not have been a similar impact before the existence of a 'universally'
accepted form. The form has also been added to the Electronic Palliative Care
Coordination System (EPaCCS) which is currently being rolled out in Leeds which
will further improve electronic communication across organisations.
[email protected]
Choice
The initiatives described in this report will enable people to formulate and
communicate their choices for care at the end of life. In May the Department of
Health published Liberating the NHS: No decision about me, without me - Further
consultation on proposals to secure shared decision-making. This reiterated the
Department’s commitment to introducing a right to choose to die at home, including a
care home, when services are well enough developed to allow that to be a realistic
offer. The document also reiterated the plans to run an evaluation of progress in
2013 to determine how soon this might be deliverable.
Dementia – the Prime Minister’s Dementia Challenge
While the principles set out in the End of Life Care Strategy apply to all adults
approaching the end of life, the detail of how and what care is provided will vary
depending on someone’s condition. We have reported in previous years on the work
done focussed on kidney care, which itself has provided a model for heart failure.
With an ageing population dementia is a particular and growing challenge for end of
life care. In March the Prime Minister launched his Dementia Challenge, which
includes end of life care. The NEoLCP is one of the key stakeholders which is now
engaging with these issues.
Merseyside & Cheshire Palliative & End of Life Care Network (MCPEoLCN) -
Dementia Roadshows
MCPEoLCN scoped the needs of people diagnosed with dementia in relation to
support for planning for their future care. There was very little activity from health
professionals in offering an opportunity to people with dementia with mental capacity
to plan for their future care. The planning process mainly occurred when the person
had lost mental capacity.
End of Life Care Strategy: Fourth Annual Report
38
In dementia, this needs to take place early, while someone has sufficient mental
capacity and where decisions and preferences can be recorded consistent with the
principles set out in the Mental Capacity Act. GPs are crucial for people with
dementia, both for obtaining a diagnosis and accessing ongoing support and care.
Three roadshows across the network were delivered in April and May 2012. The
roadshows covered five localities. They were delivered to 150 health professionals,
91 of whom were GPs. They aimed to increase awareness of the role of health
professionals (especially GPs) to support people diagnosed with dementia who still
have capacity to plan for their future care. This would include offering an advance
care planning discussion.
It was also important to increase the health professionals’ knowledge in identifying
end of life in dementia patients and potentially reducing burdensome interventions.
Speakers included a community geriatrician active in the ACP process in care
homes, two Consultants in Palliative Medicine, Alzheimers Society, End of Life Care
(EoLC) Facilitators and a carer. The roadshow content included the use of the EoLC
tools, identification of the end of life in dementia using prognostic indicators,
evidence based research on what would be a burdensome intervention for a person
with dementia and how to reduce avoidable hospital admissions. Ethical
considerations were also discussed i.e. nutrition and hydration.
The EoLC Facilitators were crucial in giving the local overview of services and
information especially around the EoLC tools. Delegates had a resource pack which
included NEoLCP resources.
Evaluations consisted of a questionnaire pre and post event on knowledge, skills and
confidence and the delegates will be followed up at three and six month intervals to
capture outcomes from the roadshows and identify any further training needs.
Evaluations showed an overall increase in knowledge, skills and confidence of
participants in having discussions and using the ACP process, identifying end of life
in dementia patients, also reducing burdensome interventions and the use of the
Liverpool Care Pathway. Feedback was extremely positive. As a result of the
roadshows there is evidence ACP has taken place for a number of patients with
dementia already and there have been enquiries looking for more dementia events.
Contact: caroline.flynn@mccn.
Improving the End of Life Care experience of People with Dementia
For the past two years the NHS South of England Central Clinical Leaders Network
has focused on increasing awareness of the end of life care (EoLC) needs of people
with dementia and their carers. The campaign has had a big impact – but there is
still a long way to go.
The network decided to focus on dementia because we were well aware of gaps in
the provision of palliative and EoLC as well as in support for patients with dementia
End of Life Care Strategy: Fourth Annual Report
39
and their carers. We also recognised that the number of people developing
dementia was growing as was the cost of caring for them.
We set out two principal aims: to create a robust and clear dementia pathway and to
ensure mass awareness and engagement so that EoLC for people with dementia
can be improved.
Initially this involved seeing how many people with dementia were on EoLC locality
registers. Numbers were very low so a robust campaign to raise general awareness
about dementia began. Educational sessions took place in the community to help
case managers improve their understanding of dementia as well as their ability to
support patients and relatives.
Memory clinics were visited to link with colleagues working in mental health to
promote the inclusion of patients with dementia on end of life registers. The EoLC
practice educators also actively promoted identification of people nearing the end of
life and end of life registers, both within GP surgeries and across nursing homes. To
ensure dementia and EoLC are linked strategically EoLC groups routinely discuss
dementia at EoLC meetings.
The results have been dramatic. Numbers of people with dementia and who are
offered an advance care plan have increased and EoLC is now a recognised part of
dementia services, something that will be further strengthened by EoLC’s inclusion in
the Prime Minister’s Dementia Challenge.
Liz Clements, Inpatient Manager, Prospect Hospice,
[email protected]
Cancer
Much of the basis for the End of Life Care Strategy came from work with cancer.
The challenge has been to bring the quality of care for other conditions closer to the
standard which has been available for cancer. However this does not mean that
cancer can safely be ignored. Indeed, the improvements in cancer care mean that
there are now increasing numbers of cancer survivors who present particular end of
life care challenges. The Cancer Survivorship initiative includes a workstream on
Active and Advanced Disease which is making the connections with end of life care.
Social Care
The NEoLCP’s report What we know now that we didn’t know a year ago: New
intelligence on end of life care in England (National End of Life Care Intelligence
Network (NEoLCIN) May 2012) includes the fact that 29% of people with an
Electronic Palliative Care Co-ordination System record (EPaCCS) identified that they
would prefer to die within the care home setting.
We know that in 2008-2010 16% of people living in care homes were admitted to
hospital within their last week of life and died there (NEoLCIN 2012).
End of Life Care Strategy: Fourth Annual Report
40
In order to meet the changes in demographics and ensure that the preferences and
wishes of individuals are met at the end of life including preferred place of care and
death, the NEoLCP has been supporting care homes at national, strategic and local
levels. The Route to success in end of life care: Achieving quality in care homes was
published in 2010. The guide follows the six steps of the pathway set out in the End
of Life Care Strategy. Along with this guide, other resources were published
including a quality assessment tool and a training package developed within the
North West of England Six Steps to Success programme for care homes
(http://www.endoflifecareforadults.nhs.uk/care-settings/carehomes/route-to-success-
in-care-homes-package )
Following the development and publication of the Six Steps training programme the
North West have employed facilitators to roll out and implement this within 800 plus
care homes. The Six Steps is also being implemented by end of life care
facilitators/educators within care homes nationally, including in Kent, Norfolk and
Plymouth. St Luke’s Hospice in Plymouth is implementing an adapted version of the
programme which covers over 50% of their care homes as well as ten domiciliary
care agencies.
The Six Steps to Success End of Life Care Home Programme
The Six Steps to Success End of Life Care Home Programme, developed in the
North West, was launched nationally in January 2010.
The programme has now reached approximately 400 care homes across the North
West. It has been delivered by end of life care facilitators and hospice staff to
support care homes to put into practice the information from the ‘Routes to Success
in end of life care – achieving quality in care homes’ (NEoLCP 2010).
To support the delivery of the programme the three North West Networks (Greater
Manchester and Cheshire Cancer Network, Cumbria and Lancashire End of Life
Network and Cheshire and Merseyside Palliative and End of Life Care Network)
have made all the supporting materials to deliver the workshops freely available at:
www.endoflifecumbriaandlancashire.org.uk/six_steps.php
The programme continues to evolve. Recent features being added to the webpage
include electronic audit tools and updated material. A facilitators’ online forum was
launched in October 2011 enabling facilitators from across the country to share ideas
and presentations and to support each other.
www.endoflifecumbriaandlancashire.org.uk/facilitators.php
Many care homes have now completed or are approaching the end of the
programme and are reporting positively on its impact for their residents, families and
staff. A formal evaluation is due to commence across the North West which will
explore the different delivery models, an economic appraisal and an assessment if
its impact.
Work is also underway to develop a Six Steps to Success End of Life Care
Programme for Domiciliary organisations and their care workers.
[email protected]
End of Life Care Strategy: Fourth Annual Report
41
The NEoLCP’s 2012 report Critical success factors that enable individuals to die in
their preferred place identified the development of care homes as one of nine critical
factors in enabling people to do so. The report was based on contributions from
commissioners and providers from seven PCTs. Investment in training for care
home staff was seen as a priority to enable individuals to remain within the home,
reduce unnecessary hospital admissions and ensure rapid discharge back to their
home (based on preference). Other factors included use of nationally recognised
tools or their equivalent, for example Advance Care Planning, Preferred Priorities for
Care, Gold Standards Framework and Liverpool Care Pathway.
Supporting People to Live and Die Well: Phase 2 implementation
The NEoLCP’s Social Care Framework (SCF) – ‘Supporting People to Live and Die
Well’ – was rolled out between July 2010 and March 2011 through regional
roadshows in each of the nine Association of Directors of Adults Social Services
regions (ADASS) and through promotion at health and social care conferences and
events. During this phase eight test-sites were also commissioned which reported in
June 2011 and their results were disseminated at a showcasing event in October
2011. The NEoLCP enjoyed good support in this programme of work from the
Department of Health’s Social Care Directorate’s Deputy Regional Directors and is
keen to identify a joint action plan for Phase 2. A similar process is underway with
ADASS: both partnerships are key to the success of the social care end of life care
initiative to ensure sustainable service improvements in end of life care support and
to embed these as part of the core business of Council’s, local Commissioning
Groups and Health and Well Being boards.
In Phase 2 the programme has identified three core workstreams:
Workstream 1: Embedding the Social Care Framework in front-line practice,
service development and delivery in the regions.
This work is focused on specific initiatives put forward by the regions for NEoLCP
support. The (modest) financial support is treated as pump-priming only, the
intention being that these are not time-limited interventions but should become
embedded in ongoing practice. The projects currently supported are
1. A Community Response to End of Life Care (Nigel Walker - Creative
Commissioning)
2. Supporting Integrated Working Between Social Care and Primary Health Care
(Yorkshire and Humberside Social Care End of Life Care Strategic Leads
Group)
• Hull workstream - Raising Primary Care professionals’ awareness of the
role of social care in end of life care.
• Wakefield workstream – Support the effective contribution of domiciliary
care workers to end of life care in multi disciplinary team meetings.
• York workstream – Support the effective contribution of home care staff in
end of life care pathways of care delivery.
End of Life Care Strategy: Fourth Annual Report
42
3. Developing a Good Death Charter for People with Dementia and their Carers
(North East Good Death Charter Group/ North East Dementia Alliance)
4. Using Action Learning to Embed End of Life Training in Social Work Teams
(East Lancashire Palliative Care Partnership/Cumbria and Lancashire End of
Life Network/Lancashire County Council)
5. Delivering Integrated End of Life Care Training through joint Social and Health
Care Professional Education (Merseyside and West Cheshire Palliative and
End of Life Care Network)
6. Developing Training from the Prisons Route to Success (Prisons RTS Project
Working Group/Merseyside and Cheshire Palliative and End of Life Care
Network)
7. End of Life within Dementia Care Homes (Derby City Council/Derbyshire
CCG/Making Space)
8. A Joint Social and Health Care Training Needs Analysis and Scoping
Exercise for the Delivery of Integrated End of Life Care (Norfolk County
Council/Norfolk Community Health and Care NHS Trust/NHS Great Yarmouth
and Waveney/NHS County Workforce Group/Anglia Cancer Network).
9. An approach to localised involvement and development in support of people
at End of Life - including family carers and people living and dying with
dementia (South of England Health and Social Care Partnership)
10. End-of-life intervention skills: consultation and education for Bromley social
care staff (St Christopher’s Hospice/London Borough of Bromley).
In addition to these specific initiatives, work is ongoing to develop networks of end of
life care leads in local Councils and end of life care champions across social care.
Workstream 2: Maintaining and developing strategic partnerships, innovation
and service implementation in the social care world
• ADASS: The ADASS executive group have endorsed an advisory audit
and RAG rating system for end of life care which will more systematically
assess progress on the delivering of the end of life care social care
framework in local areas and will be used to disseminate, promote and
network best practice. The advisory framework will provide a focus on
o awareness raising through Council, Public Health and Voluntary
and Community Faith sector networks in end of life care
o identifying robust joint commissioning of end of life care
o integrated service delivery models across health and social care
o contract and service specifications covering end of life care
standards
End of Life Care Strategy: Fourth Annual Report
43
o networks between specialist palliative care and generic social care
teams, end of life care needs into core assessment, support
planning and personalised systems
o early identification for end of life care needs and best use of the
Mental Capacity Act
o workforce and devolvement initiatives supporting end of life care
across the social care sector; and
o promoting culture change in Councils in relation to end of life care.
This will complement ADASS guidance supporting the implementation of the
Care and Support White Paper and related project work on the Palliative Care
Funding pilots.
• National Institute of Health Research School for Social Care Research: end of
life care remains a key research question for them. The London School of
Economics is to undertake modelling and economic evaluations of selected
Phase 2 interventions in Yorkshire and Humberside and London.
• College of Social Work: co-badged a ‘Route to Success’ (RTS) guide for
achieving best quality practice in social work when supporting people with end
of life care needs. The guide was developed by a stakeholder group and
launched in July 2012. The College of Social Work is also considering
pursuing the possibility of an end of life care community of interest forum for
its members.
• Association of Palliative Care Social Workers (APCSW): coordinating the
development and maintenance of the end of life care champion’s network for
NEoLCP.
• Social Care Institute of Excellence: development of their end of life care
platform and other dissemination activities.
• Skills for Care: they worked closely to support the implementation of the
Social Care Framework in the Phase 1 roadshows and there is continuing
liaison over e-learning and other initiatives.
Workstream 3: Promoting end of life care in social work practice and social
work education.
There are three parts to this workstream
• The Route to Success guides and the College of Social Work community of
interest forum
• Rolling out training and mentoring schemes for qualified social workers from
test-sites and phase 2 projects.
• Securing end of life care modules in social work qualifying programmes.
Though at a comparatively early stage, knowledge and skills around death,
dying and bereavement has been inserted into the amended Professional
Capabilities Framework for social workers. We are also working with the Joint
University Council Social Work Education Committee (which coordinates
policy and developments across higher educational training establishments in
End of Life Care Strategy: Fourth Annual Report
44
social care policy and education) and the College of Social Work on a
proposal to develop a curriculum guide in end of life care to accompany the
Professional Capabilities Framework.
TEST - Training; Engagement; Services; Transferability and Sustainability
As part of the objective to ensure a rigorous approach to best quality practice,
evidence and tools developed from Phase 1 have been mapped across these four
themes to produce a signposting document as a core resource for Phase 2 of
implementing ‘Supporting People to Live and Die Well’. This will be widely
disseminated in hard copy as well as being online. The aim is also to convert the
learning from the ten projects listed above into an interactive resource which can be
more widely used and disseminated.
End of Life Care Strategy: Fourth Annual Report
45
Chapter 4: Improving outcomes
for people approaching the end of
life: coordination and delivery
Electronic Palliative Care Coordination Systems (EPaCCS)
The acute sector - the Transform Programme
Carers Strategy
Hospice capital grants
“TheNHShasnoideawhatwasgoingon.TheGPandHospitalwerestrangers”.
“Ifoundallthevariousagenciesdidnotspeaktoeachother”.
“Iknoweverythingisdowntomoneybutcareathomeneedsthoroughoverhauling”.
“IamsurehewouldhaveappreciatedanoccasionalvisitfromhisGP,thenIthinkhisdoctorwould
haverealisedhowmuchhisconditionhaddeteriorated”.
“Itwasthehospitalandtheresidentialcarehomethatgothimthecarepackagethatwasputinplace”.
“Thenurseconsultantinpalliativecarewasfantasticandonceheagreedtheendoflifepathway
everythingimproved”.
“Inherfinaldays(athome),herGPandstaffwerereallygoodandunderstandingtoMumandus.The
DistrictNursecamedailyforthelastthreedaysandshewasalsoverygood...andwaswithuswhen
Mumpassedaway,whichweappreciatedalot”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
Communication, both between care providers and between professionals and the
public, is a constant refrain in the End of Life Care Strategy. This Chapter focuses
on the work in hand to improve this aspect of quality and productivity.
EPaCCS
Electronic Palliative Care Coordination Systems (EPaCCS) is the term now in use for
the locality end of life care registers described in the End of Life Care Strategy.
Following successful pilots from October 2009 to March 2011, evaluated by Ipsos
MORI,
2
the National End of Life Care Programme (NEoLCP) has led on spreading
uptake across England.
EPaCCS provide a means of recording and communicating key information about
people’s wishes and preferences for end of life care. They aim to improve
coordination of care so that end of life care wishes can be met and more people are
able to die in the place of their choosing and with their preferred care package. As
well as making significant improvements in care quality EPaCCS should also have
2
End of Life Locality Registers Evaluation: Final Report. Ipsos MORI. June 2011. Available:http://www.endoflifecareforadults.nhs.uk/publications/localities-registers-report
End of Life Care Strategy: Fourth Annual Report
46
the potential to generate efficiency savings through reductions in unwanted and
inappropriate interventions and emergency admissions to hospital
3
.
The benefits dependency diagram below, reproduced by kind permission from Karen
Henry, Palliative Care Team Leader Leeds Teaching Hospitals Trust, summarises
where and how EPaCCS is expected to improve the quality and efficiency of
services.
Building on the learning from the pilots, the NEoLCP and the Department developed
a national information standard (End of Life Care Co-ordination: core content
4
),
which has been approved by the Information Standards Board for Health and Social
Care. The standard was published on 20 March 2012 and specifies the core record
content to be held in end of life care coordination systems, facilitating the consistent
recording of information by health and social care agencies and, with the consent of
the individual, supporting safe and effective management and sharing of information.
Implementation Guidance
5
has been published to support commissioners, health
and social care organisations and IT systems suppliers in implementation of the
standard and EPaCCS and to inform local decision making. The standard requires
3
The information strategy for public health, adult social care and for the NHS in England (Dept. of
Health, May 2012)http://informationstrategy.dh.gov.uk/category/case-studies, , /,http://informationstrategy.dh.gov.uk/epaccs,
orhttp://informationstrategy.dh.gov.uk/end-of-life-care-intelligence-network/
4
End of Life Care Co-ordination: core content.http://www.endoflifecareforadults.nhs.uk/strategy/strategy/coordination-of-care/end-
of-life-care-information-standard
5
End of Life Care Co-ordination Implementation Guidance. National End of Life Care Programme.
March 2012.http://www.endoflifecareforadults.nhs.uk/publications/implementation-
guidance
End of Life Care Strategy: Fourth Annual Report
47
all IT systems and software supplier contracts for new EPaCCS issued after 20th
March 2012 to specify the requirement for systems to be compliant with the new
standard. Where an EPaCCS is already in place, suppliers must ensure systems
are compliant by 1 December 2013.
The standard allows for local determination and configuration of the electronic record
systems and platforms. Local areas may decide to extend data items beyond the
core requirement depending on their own circumstances. A wide range of different
implementation approaches are currently being adopted, including Advanced Health
and Care (Adastra), SystmOne, McKesson and Summary Care Record (SCR)
reflecting the regional differences in systems and size of the locality being covered.
Other systems such as EMIS Web and the Medical Interoperability Gateway (MIG)
are similarly being considered.
National implementation has also been supported by specialist technical support
from the Department of Health’s Informatics team. In particular, they have been
working on development of Interoperability Toolkit (ITK) interoperability specifications
to enable EPaCCS to be used easily regardless of system supplier. Working in
collaboration with the ITK team, work is underway to define interoperability
specifications that will enable different clinical systems to share data consistently
within stringent clinical governance rules. This will ensure that clinical needs are met
to support co-ordinated care for people with long term conditions and those
approaching the end of life.
The focus this year therefore has been to provide central support to localities
through:
• facilitation of widespread implementation and uptake of EPaCCS;
• assessment of EPaCCS’ impact on improving the quality of end of life care in
supporting delivery of preferred place of care and preferred place of death;
and,
• delivering the information standard and developing national enablers, such as
the interoperability standards, to support data sharing across different clinical
systems.
End of Life Care Strategy: Fourth Annual Report
48
Implementation spread and impacts upon service improvement
What we now know about EPaCCS deployments comes from a range of sources: an
SHA level implementation survey conducted at the start of 2012; a PCT level
implementation survey conducted in July 2012; feedback from three regional
EPaCCS events; and information shared on the dedicated EPaCCS project support
site on NHS Networks, plus regular contact with project leads and key stakeholders.
What has become clear from the data is that there is now a real sense of spread of
EPaCCS implementations nationally.
Locality register pilots (2010-11) Mid 2012 EPaCCS status
update
Blue: Pilot sites, Green: Full implementation, Orange: Partial implementation, Blue: Projects being
planned
Map data © 2012 Basarsoft, GIS Innovatsia, GeoBasis-DE-BKG (©2009), Google, Tele-Atlas 2011 Google [ed note: Please
display attribution within or immediately adjacent to the visual, and ensure it is readable]
CCG geographical data sourced from NHS Commissioning Board
While these maps show the central host for each EPaCCS it does not show their
coverage. EPaCCS vary in size. In the South West, the EPaCCS led from Weston
covers almost the entire SHA region, while London’s Coordinate My Care is city
wide. Other EPaCCS are smaller.
Over the last year the national EPaCCS implementation project team has -
• Facilitated deployment of the information standard in relevant health and social care organisations and
supported appropriate use of the guidance;
• Provided central support to local EPaCCS implementations across localities in England;
• Developed a collaboration space on NHS Networks for sharing of good practice and discussion of key
issues for implementers;
• Provided central technological and informatics support for local delivery of strategic EPaCCS solutions
• Provided a central monitoring function to periodically monitor the progress’, spread and impact of
EPaCCS;
• Reviewed the national information standard as required by the Information Standards Board for Health
and Social Care;
• Provided support and issue resolution to organisations implementing the standard.- evidenced by
website, call handling/query management protocol and risk log/escalation process for clinical safety
issue; and
• Held a number of regional EPaCCS roadshows to showcase best practice.
End of Life Care Strategy: Fourth Annual Report
49
Where EPaCCS is becoming established it is also beginning to show outcomes.
While sample sizes are still small, some sites report achieving Preferred Place of
Death for 70% to 80% of those on a register. Deaths in hospital have more than
halved for others.
When the place of death data is compared for all EPaCCS early adopters (who
provided relevant data) against the English national average baseline data there is
emerging evidence that EPaCCS are helping to support people to achieve choice
and to die in their usual place of residence (if such is their wish).
Salford has built on its own integrated record also called
Co-ordinate My Care. Early data show that actual place of
death, where known, for those added to their system during
2011-12 was 61% care home (residential or nursing), 27%
at home, and 6% in hospital. The high percentage shown
for care homes reflects the fact that in Salford there is a
dedicated Care Homes Practice that has been at the
forefront of identifying, and recording details for, patients in
their last year of life.
In South Essex PCT
of those people who
were on the
EPaCCS register
and stated a
preference 70%
achieved Preferred
Place of Death.
Of those dying whilst
on the register, 18%
died in hospital,
whereas 46% died
at home.
In the South West
their EPaCCS system
now supports 14 PCTs
across the region,
sharing end of life care
preferences with out of
hours services, GPs,
A&E, community
health providers,
social care and
specialist palliative
care. Controlled
access to the record is
via a shared web
In London, where Coordinate My Care (McKesson,
Liquid Logic) is being rolled out as an SHA-wide
EPaCCS, 2198 patients had a record on its EPaCCS
system. Of those that have died on the register, (n= 429)
figures show that 51% died in their usual place of
residence (DiUPR) whilst 24% died in hospital; the
national DiUPR rolling average for the same time period
is 41.7%. The quality of end of life care in London is
undergoing radical change; the EPaCCS is an important
part of that change.
End of Life Care Strategy: Fourth Annual Report
50
Place of death
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
Hospi tal Care home Hospi ce Home Other
Survey respondents (n= 9 orgns)
Engl and average
Note on Engl and average data: Other not
recorded ; hospi tal deaths do not
i ncl ude use of hospi ces wi thi n
hospi tal s.
Source: England average - NEOLCIN end of life care profiles - Place of death 2008-10 -http://www.endoflifecare-
intelligence.org.uk/profiles/pct/atlas.html
Source: EPaCCS mid 2012 survey
Additional EPaCCS benefits are also being reported across early adopter sites
including:
• The ability to co-ordinate care for long term conditions patients who may be
entering their last year of life;
• Provision of a single point of access for key end of life care information about
people that helps support patient choice and avoid unnecessary hospital
admission. This is further enhanced where the EPaCCS is linked to a care
co-ordination system such as that employed in Bedfordshire;
• EPaCCS implementations facilitating wider end of life care service
transformation and education programmes;
• The availability of key data from EPaCCS is supporting QOF reports, as
currently being used within the South West, and is informing future
commissioning plans; and,
• EPaCCS implementations are bringing clinicians, commissioners and IT leads
together to work collaboratively to help deliver a good death; sharing data is
just one of many ways in which this can happen.
End of Life Care Strategy: Fourth Annual Report
51
Next Steps
Building on well established links with partners working on long term conditions
(LTC) we are now working across programmes to integrate and look for shared
solutions. For example, all of the ITK work will support activity across the LTC, end
of life care and frailty pathways as a key system redesign/enabler to facilitate
delivery of care nearer to a person’s usual place of residence.
• Seehttp://www.endoflifecareforadults.nhs.uk/strategy/strategy/coordination-of-
care/end-of-life-care-information-standard for detailed information on
EPaCCS
• The national EPaCCS implementation team will be initiating widespread
consultation on the interoperability standards in the early autumn.http://www.networks.nhs.uk/nhs-networks/qipp-digital-technology-and-
vision
Key points for EPaCCS implementation
? Ensure full compliance with the information standard
? Link implementation to other strategic projects such as 111 roll out and care
co-ordination centre developments as has been done in London, South
Central and South of Tyne and Wear
? Assess the current IT infrastructure and landscape and build upon the best of
what already exists – don’t restart from scratch
? Involve all key stakeholders; be clear about the vision and get senior ‘buy-in’
across health and social care from the start. GPs were top priority for rollout
for the majority of early adopters, followed by community providers, out of
hours and ambulance services, and acute hospitals. Don’t forget
commissioners.
? Collect baseline data to support the case for change and allow measurement
of change over time
? Be realistic about what can be achieved.
? Consider a phased approach to implementation across care settings
? Local datasets, in addition to the core data set that complies with the
information standard, will need to be agreed and coding identified/developed.
? Agreeing an approach to reporting and monitoring will be of benefit. In
Somerset, a reporting template is in use of which others are taking note
? Recognise that N3 access is a key issue to be addressed
End of Life Care Strategy: Fourth Annual Report
52
Areas are adopting EPaCCS in ways which meet their own local need.
NHS Bedfordshire - Partnership for Excellence in Palliative Support (PEPS)
Across Bedfordshire, a single telephone number and central hub hosted by Sue
Ryder was established to co-ordinate all palliative care 24 hours a day, 365 days a
year using a shared electronic record on SystmOne. Led by NHS Bedfordshire and
Sue Ryder, 15 organisations now work in partnership to improve the experience and
continuity of care for patients in the last 12 months of life. PEPS also supports
generalist health and social care professionals to provide care at the patients’ place
of choice which is predominately at home.
Senior nurses are the first point of contact on the phone for patients, families, carers
and health and social care professionals so that the most appropriate health or social
care professional is identified to help patients in a timely manner.
An electronic palliative care coordination system (EPaCCS) was developed to
enable sharing of patient information utilising SystmOne. An information-sharing
protocol and patient consent forms are in place to support this.
Other services have been extended to enable equity across the county – eg. Face to
Face palliative nurse assessment out of hours, a palliative care support worker
service and extended hospice admission times.
Organisations committed to working together to deliver PEPS through signing a
memorandum of understanding. Individual meetings were also set up with CEOs
and a project group involving clinicians developed the operational policy.
The service is being evaluated, working with ScHARR (School of Health and Related
Research at Sheffield University). Since it began on 29th December 2011, 476
people have been registered with PEPS. Figures to the end of May 2012 showed
that of 156 deaths 69% were at home (including residential and nursing homes), 8%
in hospital and18% in a hospice.
Initial findings are positive, and include:
. Improved integration of acute and community care through hospital
engagement.
. The MDT team, through working with PEPS, are discharging patients home
more rapidly. The local hospital is now looking to install a SystmOne read
only facility to support this process.
. The co-ordination centre has been instrumental in supporting families
between discharge and start of care package arrangements.
Feedback about the service has been very positive from GPs, patients and their
relatives. Patients and families report feeling “secure” and “not feeling left alone”,
“Rather than giving long and complicated explanations about the different roles of
people who might get involved in care, this single point of contact is much less
confusing for patients. They can also be confident that they can make one call when
End of Life Care Strategy: Fourth Annual Report
53
they need help and someone else will decide who is best placed to help them and
arrange that contact.” (NHS Beds GP)
Jo Marshall
Business Development Manager
Tel 07825125291 or email [email protected]
The acute sector – the Transform Programme
Whilst the End of Life Care Strategy places great emphasis on community based
services to support people to be cared for at home, hospitals continue to play a
major role in care at the end of life. Many people will need some hospital care in
their final year and for many, hospital will be the right setting for their final days,
whether or not it would be their first choice as a place of care. It is therefore crucial
that we continue to work to improve hospital based end of life care so that a ‘good’
death can be achieved wherever the setting.
The NEoLCP is addressing this specifically through the Acute Hospitals Transform
Programme, working with 25 Acute Trusts representing 43 hospitals from across the
country in a 12 month programme based on implementing The route to success in
end of life care – achieving quality in acute hospitals (NEoLCP, 2010). Each Trust
has been supported by a comprehensive Transforming end of life care in acute
hospitals ‘How to’ guide developed in partnership with the NHS Institute for
Improvement and Innovation (NEoLCP, 2012). The guide recommends that boards
develop a trust level end of life care action plan, an education and training plan
around end of life care and monitor the quality and outcomes of individual care /
patient experience. Education and training good practice examples highlighted
amongst many others during the programme have included:
• one to one training for consultants [email protected]; and,
• end of life care training included in induction / preceptorship courses
[email protected]
While noting that direction and support from an ‘executive lead’ is crucial, the NHSI
Productive Ward approach used within the ‘How to’ guide centres on encouraging
and supporting frontline staff to consider for themselves how their working practices
and services can be streamlined and improved. Ward leaders and champions are
identified as particularly important in supporting this change process.
The guide follows the six step end of life care pathway which formed the basis of the
route to success. For each step of the pathway it outlines key actions, examples of
good practice and sources of information and support. Rather than introducing yet
more new tools the Transform Programme’s main emphasis is on the
implementation of five key existing system wide enablers (case studies shared
throughout this report):
• Advance Care Planning
End of Life Care Strategy: Fourth Annual Report
54
• Electronic Palliative Care Co-ordination Systems
• The AMBER Care Bundle
• The Rapid Discharge Home to Die Pathway
• The Liverpool Care Pathway.
Now entering its second phase the programme will be working with approximately 40
more acute hospitals nationally to share key learning and service improvements
which have been achieved using simple productive principles and the five tried and
tested key enablers.
Phase One participating Trusts
Phase 2 Trusts will:
• Receive electronic and hard copies of the ‘How to’ guide, containing useful
resources and podcasts;
• Be supported by neighbouring Phase 1 sites;
• Be provided with simple metrics that help them measure their own success;
End of Life Care Strategy: Fourth Annual Report
55
• Be invited to an end of first year event at the Royal Society of Medicine in
December 2012;
• Be invited to a national sharing event with Phase 1 and Phase 2 sites in
March 2013.
Carers’ Strategy
The Coalition Government continues to take forward the commitments set out in
Recognised, valued and supported: next steps for the Carers Strategy.
The Department of Health funded a programme of activities by the RCGP, Carers
Trust and Carers UK to increase awareness of carers' needs for support among
health care professionals. This programme included the appointment of GP Carer
Champions and volunteer Carer Ambassadors, the provision of in house training and
the dissemination of good practice. The Department is planning to build on this work
programme further in 2012/13, including extension to the acute hospital sector and
community nursing.
Independent evaluations of two Department of Health funded initiatives were
published in November 2011:
New Approaches to Supporting Carers' Health and Well-being: Evidence from the
National Carers Strategy Demonstrator Sites programmehttp://www.sociology.leeds.ac.uk/circle/news/new-approaches.php
Training and Supporting Carers: the National Evaluation of the Caring with
Confidence programmehttp://www.sociology.leeds.ac.uk/circle/circle-projects/completed-projects/evaluation-
of-the-caring-with-confidence-programme.php
In June 2012 the Department of Health co-hosted a National Summit with Employers
for Carers, which kick started some joint working to consider what further steps might
be taken to support carers to remain in paid employment, if that is what they wish to
do.
Carers are central to the Government’s proposals for care and support as set out in
the White Paper Caring for our Future and the draft Care and Support Bill. We will
be legislating to extend the existing rights to a carer’s assessment and provide
carers with a new entitlement to support to meet their needs. For the first time
carers will be placed on the same legal footing as the people they care for.
The draft mandate for the NHS Commissioning Board, which will be at the heart of
the accountability relationship between the Department of Health and the Board from
April 2013, contains a specific objective to improve the support that carers receive
from the NHS by earlier identification of carers and signposting to advice and by
working collaboratively with local authorities and carers’ organisations to enable the
provision of a range of support.
End of Life Care Strategy: Fourth Annual Report
56
Hospice Capital Grant
In May the Department announced a new £60 million capital grant scheme for
hospices. This scheme is open to both adults’ and children’s hospices. Help the
Hospices are managing the scheme and have run a series of roadshows to help
hospices to understand the process and requirements. The eligibility criteria are
available on their website. The deadline for applications is 5 November and
successful hospices will be informed of the outcome in March 2013.
End of Life Care Strategy: Fourth Annual Report
57
Chapter 5: Improving outcomes
for people approaching the end of
life: the last days of life and care
after death
Rapid discharge
Liverpool Care Pathway
Death certification
Bereavement
Tell Us Once
“Whenshewasinhospital,shewantedtocomehometodie.Therewasalotofstressonthefamily.”
“The(hospital)staffwereverysupportivetousasafamilyforwhichwewereverygrateful.Weasa
familywereallowedtostaywithhim24/7andwelookedafterallofhisneeds.”
“Myhusbanddiedpeacefully.Staffwerekindandconsiderateanditwasacomforttomeandthe
family”.
“Mywholefamilyfoundtheattitudeofthedoctorsandnursingstaffdeplorable.Weshouldputina
complaintbutduetooursadnesswejustwantedtoremoveourselvesfromthehospitalasquicklyas
possible”.
“TheMcMillannurseprovidedthebest–andonly–emotionalsupportforbothmumandourfamily.
Wehadconfidenceinhercare”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
Rapid discharge home to die pathway (Transform Programme Key
Enabler)
Many hospitals now operate a rapid discharge scheme to enable dying patients to be
transferred home within 24-48 hours. Some are even working towards discharge
within four hours for especially urgent cases.
All this requires clear pathways based on local procedures and close co-ordination
between all those involved. It also needs to take account of local working practices.
For example, some district nursing services will not care for someone at the end of
life if there is not a hospital bed within the home, so this may need careful advance
planning.
The handover of medication is also important. This means good documentation is
needed, using local prescription formats, to ensure that the medications started in
hospital can be given by community staff without having to wait for a GP to prescribe
them.
End of Life Care Strategy: Fourth Annual Report
58
Ideally a member of the hospital staff should accompany the person home where
they would be met by community staff. Face-to-face handovers tends to be more
effective, although this is not always possible.
Another critical element is careful, sensitive discussion with the individual and their
family so they understand the implications of a transfer. It also makes sense to
place relevant information on Electronic Palliative Care Coordination Systems
(EPaCCS), where established, to ensure care is co-ordinated between the different
services.
Royal Liverpool and Broadgreen University Hospitals Trust
The Royal Liverpool and Broadgreen University Hospitals Trust has been operating
a rapid discharge pathway for the last 10 years. Two years ago the Hospital
Specialist Palliative Care Team made a number of changes to bring it into line with
version 12 of the Liverpool Care Pathway for the Dying Patient.
A stakeholder meeting was used to address several key themes that had the
potential to delay the smooth operation of the discharge process. These were:
. the release of key medications from pharmacy;
. the production of equipment for the home; and
. the speed of response of the ambulance service.
In most cases this was a matter of speeding up the process but with equipment, for
example, it could be a matter of deciding which the priority was: locating the right
equipment or getting the patient home. The key was flexibility and placing the
patient’s wishes at the heart of everything.
The team also established two levels of urgency for those awaiting rapid discharge.
In future it would aim to discharge level one patients within six hours while level two
patients would be discharged within 12-24 hours.
The result has been a more streamlined service with all those who expressed the
wish to go home to die achieving their wishes within the allotted time. Inevitably, in
such a fast-moving scenario, some change their minds. Some families start going
through the process and then for one reason or another they find they can’t do this
and the patient stays in hospital.
The key to success is close co-ordination and good teamwork, working very closely
with the discharge planning team. Joint meetings with them and, especially, with the
patient and family are key to find out what their expectations are.
An average of 30 patients return home each year through the rapid discharge
pathway, and so far none has had to be readmitted or re-referred.
End of Life Care Strategy: Fourth Annual Report
59
The Liverpool Care Pathway (LCP) for the Dying Patient
The LCP is a multi-professional, outcome-driven document that provides an
evidence-based framework for the delivery of care in the last days or hours of life.
The use of the document should be underpinned by an implementation, education
and training programme and sit within the governance agenda of individual
organisations. It has been identified as best practice within the National Institute for
Health and Clinical Excellence (NICE) Guidance for Supportive and Palliative Care,
was highlighted as one of three end of life care tools by the Department of Health
and is recommended in the End of Life Care Strategy and Quality Markers.
Version 12 of the LCP, which was published in December 2009, retains the focus of
earlier documents on communication, information and comfort care in the last hours
and days of life. It also includes an algorithm to support the identification of the
dying phase and more explicit goals on hydration, nutrition and skin integrity.
Over 2,000 organisations in the UK are currently registered with the LCP central
team, including hospitals, hospices, care homes and home teams. In addition more
than 20 countries outside the UK are working with the LCP.
Cheshire and Mersey Critical Care Network12
The Marie Curie Palliative Care Institute Liverpool (MCPCIL) has been running a
pilot for the last nine months to introduce the latest version of the LCP into all 11
intensive care units within the Cheshire and Mersey Critical Care Network.
The project, funded by the Merseyside and Cheshire Cancer Network, has identified
key champions in each site who meet on a monthly basis to discuss progress. They
are also responsible for delivering education and training to their staff.
The LCP is an integral part of intensive care where, inevitably, the number of
unexpected deaths tends to be high. One major difference from other areas of care
is that the pathway may only come into play when decisions are taken to withdraw
treatment and this may be very shortly before the patient’s death.
When a patient is on a life support system then discussions start to take place
involving the family and multidisciplinary team. If it is decided to withdraw treatment,
the space of time between withdrawal and death can be measured in hours or even
minutes.
So far 10 of the 11 sites have achieved their targets of providing training to the
majority of CCU staff and have also placed an average of 17.5 patients on the
adapted LCP. One site has been unable to meet the targets and will not therefore
take part in the auditing process.
A final report on what has been achieved will be produced shortly.
The LCP and its associated audit, the National Care of the Dying (Hospitals) audit, is
referenced in the NICE Quality Standard.
End of Life Care Strategy: Fourth Annual Report
60
National Care of the Dying Audit Hospitals (NCDAH) Round 3
This audit has run now for three rounds to track progress on the implementation and
use of the Liverpool Care Pathway for the dying patient (LCP). The third audit was
able to draw on clinical data from over 7,000 individuals (from 127 NHS Trusts)
whose care was supported by the LCP.
Organisational data
This time 131 hospital Trusts submitted data into the organisational element of the
audit, an increase of 13% over Round 2. The data suggest the use of the LCP is
relatively well spread throughout each individual trust, with almost all wards (90%)
using the LCP to some extent. The proportion of all patients whose care was
supported by the LCP national core document or ‘matched alternative’ has increased
since NCDAH round 2 (R2 21%; R3 31%) which suggests that the LCP is becoming
more embedded in practice within each participating hospital Trust. There is also an
increase in the amount of education and training offered in care of the dying for
medical staff (R2: 74%; R3: 90%).
Clinical data
178 hospitals (from 127 Trusts) submitted a total of 7058 individual patient data sets
this time, which is a 13% increase on Round 2. Encouragingly, these showed that
where assessments were recorded in the last 24 hours, the majority of patients were
documented as comfortable.
There was wide variation in hospital performance for goals relating to conversations
with the patient regarding awareness of dying, and addressing cultural, spiritual or
religious needs. This suggests that practice across different hospitals may be very
different, but this is an area of particular interest when compared to the experience of
hospital care recorded through VOICES. However, where the data were recorded,
they showed that where it was not possible to enter into discussion with the person
these issues have been addressed with the relatives or carers:
• 94% of relatives/carers were given a full explanation of the care plan (LCP);
healthcare professionals were able to discuss this with 56% of people at the
end of life;
• 97% of relatives/carers were aware that the person was dying; healthcare
professionals were able to discuss this with 58% of people at the end of life;
• 90% of relatives/carers were given the opportunity to discuss any
spiritual/religious/cultural requirements at this time; healthcare professionals
were able to discuss this with 61% of people at the end of life.
Leeds Teaching Hospitals Trust – Equivalent LCP
An equivalent LCP (ELCP) was developed to ensure that Intensive Care Unit (ICU)
patients, who may die imminently once life sustaining treatment is withdrawn, receive
high quality care akin to those patients who are cared for in accordance with the
Liverpool Care Pathway (LCP). The ELCP is a four page document that addresses
End of Life Care Strategy: Fourth Annual Report
61
communication with relatives or carers, spirituality, medications, discontinuation of
interventions and organ donation. The ELCP includes a withdrawal of support
algorithm to assist the Multi-Disciplinary Team (MDT) in their decision making.
Initially the Specialist Palliative Care Team engaged with staff from five ICUs across
Leeds Teaching Hospitals Trust (LTHT) in an effort to understand the reasons
behind poor adoption of the ICU LCP (11% use in comparison with 42% use of the
generic LCP throughout the rest of LTHT (April 2011-Oct 2011)).
Critical care teams felt that the LCP was too lengthy, took too long to complete and
assessment time intervals were inappropriate to be of any value to those patients
who were expected to die imminently upon withdrawal of life sustaining treatment.
The new document was designed collaboratively between specialist palliative care
team members and critical care staff using an iterative process giving careful
consideration to the four domains of care covered by the LCP – physical,
psychological, social & spiritual. The emphasis was on the facilitation of optimal care
delivery supported by concise documentation.
Since the introduction of the ELCP in ICU there has been a 20% increase in use of
end of life pathways within LTHT ICUs. In March 2012, 43% of patients who died on
LTHT ICUs were treated according to an end of life care pathway. It is anticipated
that this will continue to rise with an estimated 50% of patients in ICU who die being
cared for in accordance with the ELCP or LCP by March 2013.
The next step to ensure the delivery of high quality end of life care in critical care
environments is the implementation of the ELCP in A&E departments.
The Leeds Teaching Hospitals Trust End of Life Care Pathway Facilitators play a key
role in sustaining the use of the ELCP through training, support, monitoring and
audit.
Death certification
The Department has been piloting a new medical examiner service to improve the
robustness and accuracy of death certification. This will meet a recommendation in
the Shipman report which found that the public had lost confidence in the current
processes. The new system will apply to all non-coronial cases regardless of
whether the family chooses cremation or burial. The Health and Social Care Act
2012 provides for the new service to be run by local authorities. The Department will
consult on the draft regulations later this year. Implementation is due to begin in
April 2014.
Bereavement
Last year we reported publication of a set of draft Quality Markers for bereavement.
These were considered by NICE as part of the process for developing the Quality
Standard for end of life care for adults, which covers bereavement issues.
End of Life Care Strategy: Fourth Annual Report
62
The Birmingham Bereavement Project
This project was hosted by University Hospitals Birmingham Foundation Trust in
collaboration with the Heart of England Foundation Trust and NHS West Midlands. It
involved establishing a model for providing seamless bereavement care, including a
help and support service for those who had been bereaved.
Bereavement staff aimed to contact all bereaved relatives four weeks after a death to
discuss how they were and whether they had any questions or concerns.
During the pilot 1,856 bereaved families were offered the service and 725 took up
the offer of the call. The vast majority – 94% - required only one call but a small
minority needed further help. The report of the pilot says “It is believed that these
follow-up phone calls facilitated early intervention and [resolved] situations which, if
left unaddressed, would have resulted in a costly formal complaint.”
The project was boosted by becoming an early adopter of the new death certification
process. This led to more open and honest communication with families, enhanced
training and education for junior doctors and provided more accurate information
about causes of death.
The report recommends that the project – which has been shortlisted for a Nursing
Times award - should continue in both participating trusts and that six-monthly
reviews should be established to ensure its benefits are maintained.
A new advice website and helpline has been set up as part of the project.http://www.birminghambereavementadvice.co.uk/about-us.php
Tell Us Once
Guest contribution by Jonathan Stampton, Tell Us Once Delivery Partnerships Team
Bereavement is a very difficult time for people and it doesn’t need to be made harder
by government red tape. The Tell Us Once service makes reporting a death easier
and saves people having to notify numerous central government and council
services.
Before Tell Us Once, on average, a person experiencing a bereavement would have
to contact government seven times. Each time they often had to post off a death
certificate which could be expensive as well as time consuming.
Tell Us Once is a much easier way to report a death and there are three channels to
choose from: a face-to-face interview, dedicated telephone line or online service.
The service notifies 28 key local and central government departments and services
in a single appointment with the local authority. These services include: State
Pension; Council Housing; Council Tax Benefit; UK Passport; Library Services;
Personal taxation; and Driving licence.
Tell Us Once is now available in 80% of local authorities in England, Scotland and
Wales and coverage will rise to about 90% in the next few months. Although
End of Life Care Strategy: Fourth Annual Report
63
voluntary, the new service is popular with the people that use it and where it is
available, is already chosen by about 70% of people reporting a death.
Further information can be found at: www.direct.gov.uk/death-tellusonce Contact:
[email protected]
End of Life Care Strategy: Fourth Annual Report
64
Chapter 6: Improving outcomes
for people approaching the end of
life: commissioning and levers for
change
Commissioning in the new NHS
NICE Quality Standard and benchmarking tool
End of Life Care Quality Assessment
Workforce - e-learning
Personal health budgets
Palliative Care Funding
“Iwishtosaythatthecaremymotherreceivedduringthelastfewhoursandminutesofherlifewasto
anexcellentstandard.Asyoucantell,itismylastingandpeacefulmemoryandthatwasallduetothe
thoughtfulnessofthestaffatXUniversityHospital.”
“WardXwasdreadfulforhim;thenursesdidnotseemtocare...WardY:thedoctorsandnurses
weremarvellous;theycaredabouthimandus,thefamily”.
“Themostdistressingthingwasbeingunabletogethelpwithtoiletingetcduetotimepressuresof
staff.Hefounditverydistressingwhenthebellwasignored”.
“Wedidfeelthatthe‘system’letDaddown.Hisconditionwasinadequatelymanagedandour
concernsignoredordismissed”.
FirstnationalVOICESsurveyofbereavedpeople,July2012
Commissioning in the new NHS
Over the last year the National End of Life Care Programme (NEoLCP) has been
engaging with emerging Clinical Commissioning Groups (CCGs) to understand how
best to support them as they take on responsibility for commissioning end of life care
services. They are now working with a network of about 100 CCGs. They ran a
series of six events across the country which attracted 600 delegates and which
were well evaluated.
The events featured the Critical Success Factors (CSF) which the NEoLCP
published this year. Following consultation with PCTs the consensus was that
delivering high quality end of life care locally depended on a small number of CSFs:
• Strong commissioning and clinical leadership;
• Use of nationally recognised drivers that attract payment – Local Enhanced
Services ( LES) and Commissioning for Quality and Innovation (CQUINs);
• Flexible budgets and care packages – integrated care;
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• Use of nationally recognised tools or their local equivalent – advance care
planning (ACP), Gold Standard Framework (GSF), Liverpool Care Pathway
(LCP), Preferred Priorities for Care (PPC), (After Death Audits) ADAs and
Continuing Healthcare (CHC) Fast Track Pathway;
• Shared electronic information systems – Electronic Palliative Care
Coordination Systems (EPaCCS);
• Clearly defined access to 24 hour cover;
• Development of care homes – service improvement in the acute sector will
not be achievable without improvements in care homes;
• Use of facilitator roles and co-ordination of care across boundaries –
integrated care;
• Training to support staff delivering end of life care.
Improving End of Life Care Services by moving to outcome-based contracts
The strategic end of life care (EoLC) Programme for NHS South of England Central
was established in 2010. One of its first priorities was to bring together EoLC
commissioners and providers from across health and social care and the statutory,
voluntary and independent sectors to produce recommendations for contract
negotiations. Given the success of this work, in 2011 EoLC was the first area
chosen to implement outcome-based contract recommendations across acute,
community, mental health and care home providers. Ensuring the contract
inclusions follow the patient pathway, and are the same across all sectors and
settings, means there are no perverse incentives in the system. Localities can work
together on how most effectively to achieve the ultimate outcome of people
achieving their preferred place of death. As this process has evolved it has also
been possible to help providers move to a position where they can achieve this
outcome, initially by asking that processes are in place for advance care planning
and more recently that where people do not achieve their preferred place of death
reasons for this are audited and an action plan put in place across the locality.
Lucy Sutton, EoLC Lead, NHS South of England: [email protected]
NICE Quality Standard and guidance for commissioners
In November 2011 the National Institute for Health and Clinical Excellence (NICE)
published a Quality Standard for end of life care for adults, followed in December by
a Guide for commissioners on end of life care for adults, accompanied by a
commissioning and benchmarking (CAB) tool.
The Guide applies to all adults approaching the end of life. It provides links to
condition-specific materials but the overall message is that a generic approach will
meet most needs. It is also clear that end of life care involves the NHS, social care
and the voluntary sector.
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The Guide is intended to support implementation of the Quality Standard, which itself
broadly follows the structure of the end of life care pathway set out in the End of Life
Care Strategy, with a special section for workforce.
In the CAB NICE has brought together the best available financial information for
end of life care. It allows commissioners to select their local population and compare
it against the national average and it will then model savings based on reducing the
numbers of deaths in hospital. The guide also suggests that commissioners should
carry out more detailed local analysis of factors such as admissions in the last year
of life, type of admissions and variables such as cause of admission and condition.
This in turn is supported by the locality profiles developed by the National End of Life
Care Intelligence Network (NEoLCIN) and available on their website.
The NEoLCP has been working in partnership with commissioners to develop a web
based toolkit which provides a one stop shop by identifying the relevant resources
and sources of information and data to support effective end of life care
commissioning. The toolkit is built on a four stage commissioning cycle and
promotes joint working across social and health care services and is available on the
NEoLCP website.
www.endoflifecareforadults.nhs.uk/
End of Life Care Quality Assessment (ELCQuA)
ELCQuA is an online tool available on the NEoLCIN website which allows localities
to record, track and benchmark their progress against the Quality Markers and
Measures published by the Department of Health in 2009. These are currently being
updated to bring them into line with the NICE Quality Standard.
Workforce
Workforce development underpins the majority of end of life care service
improvements as it not only increases levels of competence and confidence but also
contributes to shifting behavioural change around end of life care. Examples of this
can be seen in other sections of the report such as GP training in initiating
conversations to support the ‘Find your 1% Campaign’ and Quality End of Life Care
for All, the partnership training between hospices and acute hospital nurses to
support the Transform project.
Multi Professional Education and Training (MPET) funding has enabled local projects
to be developed and embedded. The new opportunity for local commissioners and
providers is to establish links to Local Education and Training Boards (LETBs) to
influence decisions around education and training investment. Each constituent
provider organisation within the LETB will be able to contribute to the identification
and agreement of local priorities for the local workforce.
Nationally Skills for Care, Skills for Health and the NEoLCP produced an updated
edition of their work on competences Developing end of life practice: A guide to
workforce development to support social care and health workers to apply common
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core principles and competences for end of life care. Work is also planned to build
on both the end of life care competences and the e-learning programme, End of Life
Care for ALL (eELCA), to the Qualifications and Credit Framework (QCF).
Developments include mapping elements of the 6 Steps programme for Care Homes
to QCF.
eELCA now has 156 sessions to enable all health and social care staff free access
to end of life care learning materials. Work has been undertaken in Oxfordshire to
develop a series of blended learning pathways for volunteers, Band 5 nurses and GP
Trainees with specialist palliative care services, acute staff, ambulance staff and out
of hours staff. These pathways are being tested and should be widely available by
the end of the year. e-Learning for Health and NEoLCP have launched a resource
pack e-ELCA getting started and support pack which aims to help individuals or
training facilitators get started and use it to best meet their own and professional
needs.
Southport and Ormskirk NHS Trust – eELCA Case Study
Southport and Ormskirk NHS Trust have developed a new approach to end of life
education. We are a large Integrated Care Organisation with two hospital sites and
cross boundary primary care is a large part of our workforce. Our plan was to
develop an education programme which all grades of staff can access and allows the
staff the freedom to choose the level of education they require for their job and/or
interest. We developed the name “Skills Set Challenge”
The basis of the Skills Set Challenge was the use of e-ELCA as a theoretical
background to all education. By using the eight different “branches” or subject
matters within e-ELCA we grew a “tree” of education. Each “branch” of the tree
relates to a particular topic such as “symptom management”, and will have a bronze,
silver and gold level within.
The e-ELCA sessions within each module have been allocated to a “bronze”, “silver”
or “gold” level, and are being used as the theory to back up face to face teaching and
established courses available within the Trust and Queenscourt Hospice.
There will be some skills training available within certain levels of the Challenge and
reflective practise and case studies will cement knowledge already achieved. Staff
will be encouraged to start at a bronze level and work their way around all the
“branches” of the tree. Once all areas have been covered a Bronze Award will be
presented in the form of a bronze edged pin badge depicting an oak tree.
Staff will be able to further their knowledge should they require or wish by
undertaking course work at both silver and gold level. Similar awards will be
available relating to the level of education achieved. Education already obtained, by
the way of courses undertaken can be evidenced as part of the new pathway. Each
level will require staff to evidence their achievements by the collection of certificates
of e-ELCA modules completed and any training/courses attended. This will develop
into an End of Life education portfolio.
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e-ELCA was the basis for the new approach to end of life education and the
overwhelming incentive to use the modules was the ease of access, the quality of
education provided and the ability to use/study with e-ELCA at home, away from the
work environment.
Initial trials have proven a positive response and we aim to roll out Trust wide in the
coming weeks to coincide with the London Olympics.
Elaine S. Deeming, TRANSFORM Clinical Lead, Umbrella House,
Southport Hospital
[email protected]
NHS Midlands & East – East of England End of Life Care ABC Education
Programme for Group B Staff
The ABC education programme is funded for two years and is available to all Group
B Staff (health and social care professionals who frequently deal with end of life care
as a part of their role) in acute and primary care trusts throughout the East of
England. This free of charge, blended learning programme (e-learning and face to
face sessions with an identified mentor) is based upon the End of Life Care Strategy
(2008) and end of life care core competencies (2009). It is designed to give learners
a broad introduction and overview to end of life care.
The programme makes use of 10 ‘essential’ e-learning sessions from the national
programme of over 150 sessions within e-ELCA. The education is based upon the
five competency areas:
• Overarching Principles
• Advance care planning
• Assessment
• Communication Skills
• Symptom management, comfort and well being
This introductory course is designed to be flexible and takes approximately 6 hours
over six weeks. The e learning sessions are now available as a single learning
pathway on Oracle Learning Management (OLM) which is hoped will make access
much easier for trainees. At the end of the e-learning students are encouraged to
reflect on their learning to demonstrate the transition of theory to practice and are
invited to take part in a consolidation workshop.
Due to difficulties with accessing the e-learning via OLM or eLearning for Health
(eLfH), the East of England facilitators also provide the education via face to face
workshops which are proving to be successful (see quotes below) and now over 800
Group B staff have been trained to date.
“I really enjoyed working through the 10 modules, which I could do at my own pace. I
have learnt a lot and will hopefully make a difference to my patient care. I am now
using the references to read more about end of life care”. (Staff Nurse, Oncology,
Anglia)
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What will change because of this experience? “I feel more confident at talking
around these issues [end of life care] well before a patient is too ill to consider the
situation and make plans personal to them. I realise that I have often been with
patients who are so ill that sensible communication is past”. (GP, Essex)
Contact: Vanessa Convey, Palliative and End of Life Care Education & Training
Programme Manager, East of England Multi-Professional Deanery,
[email protected]
Opening the Spiritual Gate (e-OSG): Reaching a critical mass of the workforce
by the addition of e-learning.
"People approaching the end of life are offered spiritual and religious support
appropriate to their needs and preferences" (NICE, Quality Standard for end of life
care for adults, 2011)
An established face to face study day to raise spiritual awareness 'Opening the
Spiritual Gate' (OSG) is delivered to the health and social care workforce across
Merseyside & Cheshire Cancer Network (MCCN) and Greater Manchester &
Cheshire Cancer Network (GMCCN). The course consists of four modules or
sessions:
. 'Understanding Meaning' - definitions, distress, religious needs, rites & rituals;
. 'Communication' - opening, maintaining and closing conversations in which
the person is able to voice concerns and encouraged to make their own plan
as well as dealing with questions about the health professionals own beliefs;
. 'Recording & Reporting' - consideration of how to document and hand over
sensitive issues concisely and accurately, whilst maintaining confidentiality;
. 'Pulling it all together' - exploring how to meet national & network guidance,
action planning for future care and mapping local spiritual resources.
MCCN funded Edgehill University to work with MCCN Spiritual Care Group to
convert the OSG course to a 4 week, facilitated, constructivist, e-learning format.
As with the face to face version the facilitators are health professionals, role
modelling the point that assessing and addressing spiritual needs of patients is a
responsibility of everyone.
Eleven e-learning courses have been delivered now to 90 mixed health and social
care professionals, compared to the 763 face to face. The main difference between
the face to face and online OSG seems to be the opportunity for richness and depth
of discussion due to greater anonymity and time for reflection and consolidation of
thought, as well as the support each individual cohort provides for one other.
Many participants have said that this course has changed practice and
documentation. Where whole, smaller, organisations have delivered the course to
their entire workforce, audits are underway to demonstrate the differences that this
has made.
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Formal evaluation of the face to face and e-learning course is being undertaken this
year and the course is proving of interest to individuals and organisations further
afield.
www.openingthespiritualgate.net
[email protected]
[email protected]
Personal health budgets
Personal health budgets are one way of giving people more choice and control over
how their health needs are met, but they are new to the NHS. A pilot programme
involving around half the PCTs in England has been running since 2009 and is due
to end in October with the publication of an independent evaluation report.
Subject to this evaluation, personal health budgets will be rolled out more widely,
with CCGs being able to offer them on a voluntary basis. The longer term aim is to
introduce a right to a personal health budget for everyone who could benefit, with
people receiving NHS Continuing Healthcare being the first to have a right to ask for
one from April 2014.
A number of stories are available at:
www.personalhealthbudgets.dh.gov.uk/About/Stories/ which describe what is
involved and how people have used their personal health budgets. The examples
include people paying for personal assistants to care for them or a loved one in their
own home or using complementary therapy to help with pain relief.
Palliative Care Funding
The End of Life Care Strategy Third Annual Report referred to the work undertaken
by the independent Palliative Care Funding Review.
One key conclusion of the review was that “There is a stunning lack of good data
surrounding costs for palliative care in England.” It recommended that a number of
pilots be set up to collect data and refine its proposals due to the lack of good quality
data currently available. The Government accepted this recommendation.
In November 2011 the Department issued a call for expressions of interest in being a
Palliative Care Funding pilot site. The response to this call was overwhelming, with
a total of 65 submissions being received. Ministers selected and announced the
seven adult and one children’s pilot site in March 2012.
The pilots are all local partnerships and the adult sites are being led by:
• NHS North Yorkshire and York
• St Christopher's Hospice, London
• University of Sheffield
• University Hospital Southampton NHS Foundation Trust
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• The Heart of Kent Hospice
• Poole Hospital NHS Foundation Trust
• Royal Wolverhampton Hospitals NHS Trust
The pilot for children’s services is a consortium being led by the following
organisations:
• East of England Child Health and Wellbeing Team
• West Midlands Paediatric Palliative Care Network
• Great Ormond Street Hospital, London
• Northwest Children and Young Peoples Palliative Care Network
The pilots will collect the data that will provide the information we need to test the
Palliative Care Funding Review’s recommendations. The Government has provided
£1.8 million funding support for the pilots over two years to March 2014.
This funding was increased in July this year to £3.6 million, following publication of
the Care and Support White Paper. The White Paper considered there to be much
merit in the Palliative Care Funding Review’s recommendations on a fully integrated
health and social care system at the end of life. The additional funds will enable the
palliative care funding programme to look in detail at this proposal.
The Palliative Care Funding Pilots Working Group, chaired by Professor Sir Mike
Richards, has been established and is monitoring the progress of the pilots.
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Appendix – publications from the
National End of Life Care
Programme and the National End
of Life Care Intelligence Network
• The route to success in end of life care – achieving quality for social work
(July 2012)
• The route to success in end of life care – achieving quality for lesbian, gay,
bisexual and transgender people (June 2012)
• TEST (Training, Engagement, Services, Transferability and sustainability):
Supporting people to live and die well (May 2012)
• What do we know now that we didn't know a year ago? New intelligence on
end of life care in England (NEoLCIN, May 2012)
• Planning for your future care (February 2012) and foreign language versions
published in April 2012: Arabic, Bengali, Mandarin, Polish, Punjabi and Urdu
• End of life care co-ordination implementation guidance, record keeping
guidance and record keeping summary (March 2012)
• Deaths from Liver Disease: Implications for end of life care in England
(NEoLCIN, March 2012)
• The route to success in end of life care - achieving quality in ambulance
services (February 2012)
• Transforming end of life care in acute hospitals: The route to success ‘how to’
guide (February 2012)
• Evaluating NEoLCP’s work to support and promote the integration of social
and health care (The University of Nottingham, February 2012)
• Developing end of life care practice: A guide to workforce development to
support social care and health workers to apply the common core principles
and competences for end of life care (NEoLCP, Skills for Care, Skills for
Health, February 2012)
• Critical success factors that enable individuals to die in their preferred place of
death (February 2012)
• Deprivation and death: Variation in place and cause of death (NEoLCIN,
February 2012)
• Independent evaluation of social care test sites (Centre for Housing Policy,
the University of York, January 2012)
• When a person dies: guidance for professionals on developing bereavement
services (Bereavement Services Association, Primary Care Commissioning,
NEoLCP, October 2011)
End of Life Care Strategy:
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• The route to success in end of life care – achieving quality in prisons and for
prisoners (September 2011)
• Routes to success: achieving quality environments for care at end of life
(August 2011)
• Preferred Priorities for Care tool support resources, including easy read
version, electronic version and support sheet, (September 2011)
• End of life care in extra care housing: a learning resource pack
doc_294133709.pdf