QIPP end of life care event report

QIPP End of Life Care Event Report
Great Practice Showcase – Birmingham

Quality Innovation Productivity Prevention
28th February 2012


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The Midlands and East QIPP End of Life Care Great Practice Showcase event brought
commissioners, end of life care managers and clinical staff together to learn more about the
tools and resources available to meet the QIPP challenge at end of life.

Event details at a glance
n 80+ participants
n Largest groups: commissioning leads, palliative care service leads, service development leads, end of

life care managers, end of life care education leads
n 13 Exhibitors including NICE, Mylearningspace and Find your 1% campaign
n Venue: Holiday Inn, Birmingham

Opening the event, Tessa Ing, Head of end of life care at the Department of Health, introduced key policy
drivers and outlined why the QIPP agenda offers rich opportunities to improve the care that people receive at
the end of life. She commented:

“End of life care is an area where you can improve quality while improving
productivity, because the user’s desired outcomes (usually to avoid hospital
admission where possible and to die at home) is the same as the systems.”
She explained that the focus for QIPP has been on the first part of the end of life care pathway: get that part
right and the rest becomes much easier. This means identifying people as they approach the end of life and
then planning their care as early as possible to enable them to avoid unnecessary hospital admissions and to
die in their preferred setting.
Although there has been a sustained improvement recently in deaths in usual place of residence (DIUPR),
there is still some way to go, and the data reveals variation across regions. With demographic trends –
especially in relation to dementia – leading to rapidly increasing demand on services, the time to act is
now.
And gains can be significant: these people are already in the system and in need of care. Better planning and
co-ordination of that care will result in more efficient use of resources and improve user/carer satisfaction, by
enabling their preferences to be met where possible.

Key Performance Indicators (KPI) for end of life care
KPI 1 – To increase deaths in usual place of residence (DiUPR)
Pilot KPI 2 – To reduce the number of hospital admissions of eight days or more, which end in death –
this is based on clinical need, quality of care and individuals’ preferences
Supporting KPI Dashboard – Reduction in the number of unplanned admissions in the last year of life

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Using NICE’s guide for commissioners
Elizabeth Fleming, commissioning analyst, introduced NICE’s commissioning guidance for end of life care,
designed to support achievement of the NICE quality standard for end of life care.
This practical web-based tool for commissioners includes guide text, and a commissioning and
benchmarking tool; it also signposts to regional data and offers a suite of case studies and other resources
and information.
Elizabeth echoed Tessa’s comments that end of life care offers particular opportunities to simultaneously
improve quality and productivity. At the same time, it is vital that commissioners guard against creating
perverse incentives and focus on personalised care: it is not always clinically appropriate or feasible for a
person to avoid hospital admission or die at home.
She also reported that the emerging evidence base shows that local services can be redesigned within
existing resources, making it possible to create high quality individualised care without necessarily incurring
additional costs.
The End of Life Care Quality Assessment tool (ELCQuA) can then be used to monitor progress in achieving
the standards (see page 8).

“The NICE presentation has given me a good signpost of where I can go for more
information and how I can use the benchmarking tool.” Commissioning lead
David Pearson, costing analyst at NICE, explained how commissioners can use the Commissioning and
Benchmarking (CAB) tool to support decision-making. By downloading the Excel-based tool, commissioners
can compare local data for admissions ending in death with the national average.
The tool can be used to model the savings that could be achieved based on a reduction in hospital activity,
by either avoiding admissions in the first place, or reducing the length of stay. In order to support care within
a community setting, local investment might be required and the tool gives some guidance on the areas for
investment.
He noted that while it is not always easy to assess costs in end of life care, financial analysis still supports a
case for change. Presenting data from case studies, he demonstrated that the cost of hospital admissions
and activity are very high and that a 10% reduction in admissions ending in death and or in length of stay in
hospital can result in significant reductions in costs. He commented:
“Reductions in hospital admissions and activity won’t happen by magic - we will need to
increase the support available in the community. But the evidence shows that effective
commissioning of end of life care can provide a better experience of end of life care, while also
resulting in a more effective use of resources.”

“I was really struck by just how much it costs to keep someone in a hospital bed for a long
period” Acute care director
“I work in stroke services and a third of strokes end in death, so I’ll be going back to look
at our data on length of stay in hospital” Stroke services lead

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Getting buy-in from providers in changing services
Securing improvements in quality and productivity usually means changes to how services are delivered. For
commissioners, it can be a major challenge to encourage all local stakeholders/providers to collaborate and
innovate – especially in the current economic climate, and with moves toward greater competition among
providers. Belinda Marks, Clinical Lead for Palliative Care Services described work in Bradford to change the
local ‘fast track’ service for those in the last 6-8 weeks, which demonstrates that by engaging local providers
constructively, it is possible to bring about radical changes to services.
Previously, some people had remained on fast track for considerably longer than 6-8 week with key clinical
staff, eg district nurses, spending a significant proportion of their time co-ordinating and commissioning
additional and high-cost care.
Through the new fast track service, the team supports those staff by assigning key workers who undertake
care co-ordination. This has released frontline staff for clinical care, enabling them to support and build
relationships with users/carers and has led to a reduction in commissioning of care to 20%; it has been also
very warmly received by users/carers.

“Everyone’s committed to working together to make services better but how do you
find mutual benefit for everyone in a climate of competition, when we may need to
decommission part of a service in order to make the whole better?” Commissioning lead
Persuading people to change how they work, however, is always a major undertaking. Here are some tips for
commissioners and others leading the change process:
n Build on existing services wherever possible, harnessing the expertise and experience of local

providers.
n Highlight the win-wins so that staff can see that they will also benefit from the changes.
n Make time to engage and listen. In the early stage of the process, Belinda and her team invested

around 20% of their time in talking direct to providers, but this investment has been more than repaid in
bringing them on-side.
n Hold the line! Staff need to be clear on what is required of them, so service managers need consistently

to reinforce those requirements.
n Support staff in implementation – changing a service can create real challenges; Belinda’s team

offered practical support to staff in overcoming them.
n Invest time in building and maintaining relationships with providers once the changes are

underway.

“I’m really interested in pathway re-design and I’m now wondering, should we be
remodelling services completely?” Service development lead

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Supporting users and their carers to stay at home longer
Staff from Healthcare at Home outlined how their innovative service aims to enhance the experience
of the person and their family during the last 12 months of life. At the heart of the service is an allocated
named Family Liaison Nurse Co-ordinator which supports continuity of care – valued by both users and other
local professionals.
Users/carers have 24/7 access to a nursing triage system known as the Care Bureau, which offers a single
point of access onto other healthcare professionals. Real time reporting enables the person’s record to be
kept fully up-to-date – vital for a triaging service.
A particular feature is the focus on tailoring the support to the needs of both the user and family. In addition
to addressing clinical needs, by responding to wider issues that cause distress – from a leaking washing
machine to a problem accessing equipment – they help the person manage at home for longer

“I’m interested in how we can use different IT systems to gather and share data.” End of
life care manager

Putting it into action
Dr Patrick Brooke, Director of Consortia Development, CCG lead and a practising GP, rounded up the event
by reflecting on how he and other participants could take the day’s learning forward ‘back at base’. He
commented:

“The time to act is now – there are significant opportunities to improve end
of life care quality and productivity. And demographic trends mean that we
cannot afford to wait. Above all, we need to focus on quality: if you focus hard
enough on this, the rest will follow!”
The key steps are to:
n Dig into your data – use NICE’s tools to benchmark your services and to understand your local needs and

look at your local end of life care register
n Identify people nearing end of life and get them registered, so that you can start the conversation with

them – the Find Your 1% campaign is a great vehicle for this
n Involve your local stakeholders in redesigning services to improve quality - most of the resource we need

is out there, just find it and co-ordinate it better
n Focus on co-ordinating care; new tools such as Electronic Palliative Care Co-ordination Systems (EPaCCS)

and Summary Care Record can help with this
n Use ELCQuA to track your progress
n Support your staff so that they can support their service users – a huge range of education and other

tools are available for this.

“We brought our whole team with us so we can all go back and agree our workplans
from now on.” QIPP acute director for end of life care

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Key messages
n In end of life care, if you focus on improving quality the productivity gains will follow because user/

carer desired outcomes are usually the same as those of the system: to avoid unnecessary hospital
admissions and to die at home where possible
n To reduce hospital activity and enable individual choice you need to improve services elsewhere along

the pathway – emerging evidence shows that this can lead to cost savings overall.
n It’s possible to redesign services to improve quality from within existing resources, ie without

necessarily increasing cost.
n Integrated and person-centred commissioning is key – an investment in health can result in

productivity gains in social care, for example. But guard against creating perverse incentives.
n Solutions to many of the common challenges in end of life care are already out there. A wide range

of tools and resources are now available to train and support staff in improving services, and to
benchmark progress.
n The time to act is now – there are significant opportunities to improve end of life care quality and

productivity. And demographic trends, particularly around dementia and the ageing population, mean
that services cannot afford to wait.

Where next?
Closing the event, Claire Henry, Programme Director for the National End of Life Care Programme invited
participants to make use of the resources and tools on offer, and to network with each other to find
solutions: “Someone out there has cracked the problem you’re wrestling with!”
She also identified an important opportunity for the National End of Life Care Programme to link up with
NICE in gathering and using data from end of life care services. This will not only help track progress in
improving people’s experience, but also help build the evidence base.

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National focus: ELCQuA
The End of Life Care Quality Assessment tool (ELCQuA) has been developed for all commissioners and
practitioners of end of life care in England. The web based self-assessment tool enables people to measure
how well they are doing against the national end of life care quality markers and the NICE Quality Standard.
It is an easy to use tool allowing different levels of assessment – textual, traffic lights, metrics – depending on
what needs to be measured. It enables organisations to benchmark themselves against similar organisations
nationally, within their own local health and social care community, or to show internal progress over time.
The tool is set up to allow all organisations within a health and social care community – commissioners,
acute and community hospitals, primary care, hospices, out of hours, ambulance services, and social care
- to self-assess their services against the NICE Quality Standard for end of life care and the Department of
Health quality markers .
Julie Chisnell and Elaine Owen who helped develop the system, commented:

“Our aim was to enable people to measure progress in delivering end of life
care, and to demonstrate this in a systematic way. We started with smaller
self-assessment systems in the North West and South West, and then a national
web based system was developed to allow all organisations to benefit.”
Commissioners can use the system as a tool for monitoring progress in end of life care delivery across their
community, using the traffic lighted reports in locality end of life care meetings to share progress and
agree priorities for action. The system allows sharing of documents and good practice, which providers
and commissioners find helpful to download and adapt locally. It also allows local action planning, so
organisations are able to track actions to meet objectives over time.
The QIPP KPIs are highlighted on the system so people can input their data and measure their progress
locally or nationally. In graphically demonstrating (i) red traffic light areas and (ii) progress over time, it can
be used to inform QIPP financial and activity plans. There are metrics around place of death, advance care
planning, access to end of life care electronic palliative care coordination systems, carer involvement, and so
on, allowing hard data to back up the verbal assessments and show change over time.
Julia Chisnell
Programme Manager - Cancer, End of Life Care & Urgent Care
NHS South of England (West)
Julia.Chisnell@southwest.nhs.uk
Elaine Owen
End of Life Care Lead for Acute and Specialist Services
Cheshire and Merseyside Clinical Networks, Palliative and End of Life Care Network
Elaine.Owen@MCCN.nhs.uk

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The Marketplace
The Marketplace offered participants the opportunity to learn about a wide range of innovative resources
to help meet the QIPP challenge. Thirteen exhibitors from across the region presented their work and it was
enthusiastically received by participants.

Improving identification
The AMBER Care Bundle helps staff in acute hospitals identify earlier people whose death may be
imminent, and supports them to initiate key conversations and produce a clear plan of care that supports a
person’s choice. www.ambercarebundle.org

“Really good for linking in with community and discharge liaison services”
The Find your 1% campaign encourages GPs to proactively identify those people in their locality who are
likely to die in the next 12months so that conversations and co-ordination of care can begin earlier.
amanda.rolland@nhs.net and www.dyingmatters.org/gp

Supporting and skilling the workforce
NHS Local offers a platform for delivering elearning and informal learning across the region and is available
to the whole workforce; resources include good practice case studies as well as other tools.
www.learning.nhslocal.nhs.uk
E-learning for care homes (East of England and West Midlands) and e-learning for end of life care offer
blended learning for staff in care homes and more widely. It supports staff to talk about death and dying to
help give people more choice about where they would like to die. vanessa.convey@eoe.nhs.uk
Mylearningspace offers free elearning resources, information and support including on-line courses on the
gold standard framework and verification of an expected death. www.mylearningspace.me.uk

“Will be of great value when planning educational opportunities for [the] workforce”
The Time to Talk project encourages end of life care staff to consider their own preferences around death,
so that they are more comfortable initiating discussions with users/carers.
www.eastmidlands.nhs.uk/timetotalk

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Co-ordinating care
The Regional DNACPR supports co-ordination of care by capturing essential information preferences on a
standardised form. It is recognised by providers across the region including ambulance services.
See www.dnacprlearning.co.uk
Summary Care Record is a Connecting for Health initiative that holds high level summary data about
individuals in a shareable record to facilitate delivery of safe care.
www.connectingforhealth.nhs.uk/systemsandservices/scr
John Taylor Hospice Electronic Patient Record has been designed to hold the clinical care record on
hospice service users in the community to enable co-ordination of care. www.johntaylorhospice.org.uk

Benchmarking and quality assurance
NICE’s commissioning guidance (see page 4) includes a suite of case studies and a benchmarking tool to
enable commissioners to determine the level of service needed to meet local need.
www.nice.org.uk/usingguidance/commissioningguides/endoflifecare/endoflifecareadults.jsp
ELCQuA (see page 8) enables providers and commissioners to compare their services against a range of
agreed markers and standards, with others in the locality and at a national level. www.elcqua.nhs.uk

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Case studies
Find your 1% campaign
Around 1% of the population will die within a 12month period. Many will have unplanned and
sometimes lengthy admissions to hospital during this last year of life and too often their needs and
preferences, including preferred place of death, will not have been assessed or recorded.
Under-identification of people nearing the end of life is a widespread problem: a recent snapshot survey
found that only 27% of people who were in their last year of life were identified by GPs and included
on a palliative care register. Yet statistics show that just 8% of deaths in any given year are entirely
unpredictable.
The Find your 1% campaign, developed by the National End of Life Care Programme in partnership with
Dying Matters, aims to address this through a call to action for GPs to proactively identify the 1% of their
local population who are likely to need end of life care over the following year. GPs are asked to sign up
to the campaign, signifying their commitment to find their 1%, in order to talk about, plan and make
possible people’s wishes at the end of life.
Once the person has been identified, and the necessary conversations held, their wishes can be entered
onto the local end of life care register, which will enable better co-ordination of their care and allow GPs
and others to track improvement in identification. Amanda Rolland, campaign lead, commented:

“A key indicator of whether you’re getting better at identification is an increase the
number of on your register with conditions other than cancer.”
This campaign is one strand of work to support the QIPP end of life care work stream aims of improving
quality and productivity of end of life care. Some of the benefits for individuals and professionals that the
campaign can contribute to are:
n Quality – by improving people’s choice, dignity and control and enabling better continuity and co-

ordination of care, from earlier along the journey
n Innovation – promoting cultural and behaviour change
n Productivity – avoiding unnecessary hospital admissions and fewer long stays
n Prevention – preventing crisis situations arising where possible.

For more information about the campaign go to www.dyingmatters.org/gp or contact:
Amanda Rolland
Campaign Lead
Find your 1% campaign
amanda.rolland@nhs.net

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Case studies
E-learning for care homes
The East of England (EoE) end of life care ABC care homes’ programme offers education and training via
a blended approach of e learning and face to face sessions to care home staff. Over 1300 care home staff
have been trained to date (target is 1800 and will be reached by end of project in 2013).
Education specialists in the EoE developed the programme to improve staff skills, behaviours and
knowledge in caring for people who require palliative and end of life care. It helps meet the QIPP agenda
by supporting reduction in inappropriate admissions to acute services from care homes and enabling
people to die in their preferred place of care.
Six e-learning modules cover overarching principles, communication, comfort and wellbeing, assessment,
advance care planning, end of life toolkit) and these sessions (learn, listen and practice) demonstrated
potential care home situations using interactive screens and videos. A blended approach was developed
specifically for care home staff, using basic language to communicate to staff where English is not their
first language.
As a result of the programme, regardless of complex issues arising at end of life in a residential care
setting, staff work together with all local providers and stakeholders to ensure that all the person’s needs
are met and their choices respected, to enable them have a peaceful & dignified death in their preferred
place of care.
A recent service user story highlights the impact this has had. Recently a dying resident, who had
expressed a wish to die at her residential home in Suffolk, found herself in in a local hospital. She had
complex needs which might have required more intervention than could have been provided in a
residential home. The care home manager negotiated with the discharge planning team an alteration in
medication which would reduce the possibility of complications. Together with the combined support
of the home manager, home carers, GP, district nurse, Marie Curie staff, and with continuing care,
volunteers, Hospice at Home and staff coming in to help as extra shifts, the resident was able to die at her
residential home as she had hoped to.
The care home manager at the residential home commented:

“After receiving the end of life care e-learning programme, my staff feel confident &
empowered to deliver end of life care and use the end of life care toolkit.”
For more information contact:
Vanessa Convey
Palliative and End of Life Care Education & Training Programme Manager
NHS East of England
vanessa.convey@eoe.nhs.uk
Martin Russell
End of Life Care Facilitator/Educator
NHS East of England ABC Care Homes Programme
mrmartinrussell506@gmail.com

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Case studies
Time to Talk
End of life care leaders at NHS East Midlands wanted to encourage more open conversations among
the public about death and dying, but they lacked the necessary resources to run for a major public
awareness campaign needed to reach the 4.3 million people in their region.
Instead, the team wanted to find a way of reaching the wider population by working through their own
end of life care staff. For this to succeed, staff would need to feel comfortable themselves in discussing
death openly. However, a poll conducted among the end of life care staff confirmed what wider Dying
Matters research has shown: just because someone wears an NHS uniform, it doesn’t mean that they find
it any easier to have a conversation about death.
The team therefore decided to run an internal campaign to encourage health and social care staff to think
practically about their own end of life care plans and preferences. Jo Baggott, Strategic Communications
Manager at NHS East Midlands commented:

“The idea here was that once staff felt more comfortable thinking and talking about it
on a personal level, they would find it easier to have that ‘difficult’ conversation with
individuals and their carers.”
A task and finish group worked with a social marketing company and – following lots of engagement
with staff – produced posters, a booklet and a website, all featuring local staff. The materials were upbeat
and colourful while the focus was purposely kept on practical aspects such as making wills and planning
for funerals.
Over time, the team hope that this will help meet the QIPP agenda by helping staff, people receiving end
of life care and their carers to initiate the important early discussions about end of life care preferences
that are essential to providing high quality person-centred care. This should contribute to reductions in
avoidable hospital admissions and an increase in deaths in usual place of residence.
Cultural changes like this take years – even decades – to happen, but already there are anecdotal reports
that the materials have been a useful prompt for conversations with users or carers.
To download the resources visit www.eastmidlands.nhs.uk/timetotalk. For more information, please
contact:
Jo Baggott
Strategic Communications Manager
NHS East Midlands
jo.baggott@nhs.net

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Case studies
Toughpads for hospice staff
John Taylor Hospice in Birmingham needed to find a way of ensuring that clinical staff had access to
accurate, up-to-date and relevant information when visiting people receiving end of life care in the
community, without having to rely on paper records.
The hospice, serving a diverse population of 600,000, wanted all of its clinicians to move to a full
electronic record. They introduced the use of mobile working devices in the form of ‘Toughpads’ – sturdy,
laptop style devices which were able to connect to the N3 network using SecurID tokens.
The views of end users of the Toughpad were sought, and the team invested time in testing and engaging
with staff in order to ensure that they were involved in the development and understood the benefits
involved. Che Simon, ICT Officer at John Taylor Hospice, commented:

“We spent a lot of time tailoring the use of the mobile working to ensure it would be
complimentary to the staff and their work, and was not seen as another burden to add
to their workload.”
The use of Toughpads enabled access to the clinical system while out in the community, allowing clinicians
to instantly view and update people’s records. They were also able to access their work email accounts,
and connect to the internet.
Mobile working to access a single electronic record has led to better and more relevant care for people
at the end of life, with information being shared between services and easily accessible in community
settings. There have also been time savings for staff, with a reduction in the back and forth travel to
return or retrieve paper records.
The team have been able to build in templates which incorporate options in the electronic record for
preferred place of care. This has encouraged clinicians to record and update information much more
accurately. In turn the hospice now has an increased ability to audit this information, and identify any
areas where action may be needed to improve services.
Che Simon
ICT Officer
John Taylor Hospice Community Interest Company
che.simon@bhamcommunity.nhs.uk

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www.endoflifecareforadults.nhs.uk

Programme Ref: PB0038 A 04 12
Publication date: April 2012
Review date:
April 2014
© National End of Life Care Programme (2012)
All rights reserved. For full Terms of Use please visit www.endoflifecareforadults.nhs.uk/terms-of-use
or email information@eolc.nhs.uk. In particular please note that you must not use this product or
material for the purposes of financial or commercial gain, including, without limitation, sale of the
products or materials to any person.

QIPP end of life care event report

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