Yorkshire and Humber SHA End of Life Care (EoLC) Work stream Legacy Paper
March 2013
As part of the NHS reforms the Yorkshire and Humber SHA EoLC work stream will not exist post March. This
Legacy document:
 Provides a summary of the priorities and main issues impacting on EoLC provision
 Records the work undertaken across the SHA to date and makes recommendations for on-going
support required at regional and local level.
 Summarises the national work available to support EoLC
Why is EoLC Important?
The following link is to a short video produced by the Dying Matters coalition that highlights the importance of EoLC
http://www.dyingmatters.org/page/i-didnt-want-that.
EoLC was recognised as a national priority with the publication of the national EoLC Strategy in 2008
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_086345.pdf
It continues to be recognised as a priority within the:
 The NHS Commissioning Board Mandate ‘improving standards of care and not just treatment, especially for
older people and at the end of people’s lives’
https://www.wp.dh.gov.uk/publications/files/2012/11/mandate.pdf
 The NHS Outcomes Framework – Domain 4 Improving the experience of care for people at the end of their
lives https://www.wp.dh.gov.uk/publications/files/2012/11/121109-NHS-Outcomes-Framework-2013-14.pdf
 NHS Constitution, “…supporting us to keep mentally and physically well …and, when we cannot fully recover,
to stay as well as we can to the end of our lives.”
 http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_132958
.pdf

KPIs have been agreed for EoLC. See the embedded document below

The Francis report (2013) highlights issues pertinent to the quality of EoLC.
End of Life Care - some facts
EoLC covers the time period commencing 6 – 12 months before death and ending 6 – 12 months after death. 1% of
the UK population dies each year and this is set to rise from this year.
A key aim of the National EoLC Strategy (2008) is to enable more people to be cared for and die where they would
choose, with dignity and respect.
 At present 60 – 70% of people express a preference to die at home (usual place of residence)
 Currently over 50% of people are dying in the acute setting
 Approximately 20% of the health budget is spent in the last year of life (NAO 2008)
 EoLC is often poorly coordinated leading to duplication and gaps across health & social care and
inappropriate hospital admission, investigations and treatments
 Implementing the EoLC Strategy involves leadership and innovation across multiple provider organisations
 There is a wealth of resources available to support the transformation of EoLC - key references are given in
this briefing.
Y&H SHA Area Position
The Y&H SHA EoLC work stream has been effectively supported by the Public Health Observatory with the
development of a data pack with EoLC information. (See the embedded documents on page 4)
Some of the key messages about end of life care within Yorkshire and Humber region are


Place of death (2008-10): Hospital 54%, own home 20%, care home 18%. These regional averages are
comparable with the England & Wales average but the range within Y&H varies widely.
Nearly a third of patients who die in hospital within Y&H region were in hospital for less than 3 days prior to death.
Some of these admissions may have been avoidable if appropriate support was provided to the patient and their
family to enable them to remain at home to die.
1


Over 50% of patients who die in hospital in Y&H region were in hospital for more than a week prior to death.
Some of these patients could potentially have been discharged to die at home if appropriate support was
provided.
Prevalence of the population on an end of life care register within Y&H is 0.19%. Although this is in line with the
average for England (0.19%), a measure of 0.5% has been agreed for Y&H as a reflection of the estimated
number of ‘expected’ deaths per year. This may be revised upwards as more data emerge.
http://www.endoflifecare-intelligence.org.uk/search/expected+deaths.aspx
Priorities for improving EoLC 2013/14
Prioritising the following areas will support improvement in the delivery of EoLC
 Ensuring the routine implementation of key EoLC tools into clinical practice with associated training for staff,
such as: - an advance care planning (ACP) tool (e.g. Preferred Priorities of Care (PPC)), the Liverpool Care
Pathway for the Dying (LCP) or equivalent, a rapid discharge pathway, AMBER Care Bundle.
 Preparing for the need to collect the 47 EoLC data items agreed by the Information Standards Board
http://www.isb.nhs.uk/library/standard/236
 Developing a locality-wide Electronic Palliative Care Coordination system (EPaCCS). This requires local work
to build on EoLC registers in primary care, sharing patient information across care settings and enabling the
collection of the EoLC data items.
 Coordinating care across providers: acute, primary and voluntary sector health care, social care, OOHs
provision, care homes
 Preparing for the new, national KPI to measure the percentage of people dying in their usual place of
residence (DiUPR).
 Using the results from the National ‘VOICES’ carers survey to identify and plan for improvements required in
EoLC service provision
 Ensure process in place in clinical practice to enable the start of the EoL conversation as early as appropriate
in the patients disease pathway
Main Issues Impacting on EoLC Provision
Identification of people entering the last phase of life and starting the conversation
 Research carried out by the Dying Matters Coalition (www.dyingmatters.org) has shown that Britons are
uncomfortable discussing death & dying. As a result people are not thinking about or preparing for their EoL.
 Health professionals may see the death of someone in their care as a failure, leading to barriers for patients,
carers and professionals in identifying when EoL may be approaching and making appropriate plans.
 Identifying people at the EoL requires a more systematic approach in clinical practice with links to Long Term
Conditions and Dementia care. Early identification, 6 to 12 months before death (earlier for some patients
e.g. dementia) is important to enable time for the patient’s priorities for care to be identified and plans
developed to meet those.
Assessing need and care coordination
 Not all patients are routinely offered the opportunity to record their priorities about their EoLC. Early
identification of preferences and good quality care planning have a positive impact on quality of care for
patients and on bereavement outcomes for family and carers.
 Repeat assessment and planning to meet physical, social, psychological & spiritual needs is often not done.
 Coordination of care across settings and services is not achieved. This is hindered by relevant patient
information not being shared across providers e.g. DNs, GPs, Ambulance, OOH services, acute care, A&E.
Care in the last few days and weeks of life
 If it is not recognised that patients are entering the dying phase, care may not be tailored appropriately to their
needs. This can lead to inappropriate admissions to hospital, unnecessary tests and treatments.
 The ambulance service may not be responsive enough to enable patients to be moved to their preferred place
of care.
 Knowledge and skills of Care Home staff in relation to EoLC is variable and support is lacking, leading to
inappropriate admissions to acute care in the last few days of life.
Bereavement support
 Good care before death, timely verification & certification, support & information around the time of death, all help
family and carers in their bereavement. This can reduce the need for later professional support and reduce
complaints.
Improving EoLC – Y&H initiatives
The Y&H SHA supported the development of EoLC as part of the implementation of Healthy Ambitions.
The work was led by two clinical leads; - Dr Fiona Hicks fiona.hicks@leedsth.nhs.uk – Palliative Medicine Consultant
and June Toovey june.toovey@nhs.net – Nurse Director, Yorkshire Cancer Network, with support from a 0.8 WTE
Programme manager – Penny Kirk penny.kirk@nhs.net and the SHA Lead - David Thompson
2
david.thompson@yorksandhumber.nhs.uk, Deputy Director of Nursing and Quality, Sharon Oliver
Sharon.Oliver@yorksandhumber.nhs.uk Associate Director Education Commissioning & Workforce Development.
The work was progressed via an EoLC Pathway Leadership Board (PLB) which links to three sub regional groups
hosted by the Cancer Networks – Yorkshire, North Trent and North East Yorkshire and Humber Clinical Alliance.
These groups linked to locality EoLC strategy and implementation groups at PCT level. The aim was to ensure
effective communication of initiatives and issues and to undertake work on a “do once and share” basis across the
SHA.
A number of initiatives have been undertaken as follows:
Do not Attempt Cardio Pulmonary Resuscitation (DNACPR) form – A single, patient-held DNA CPR form has been
developed and implemented across the SHA and is being used across all care providers and the ambulance service.
Support required – Regular review of the form is required and a region-wide forum to provide support and
governance for the on-going use of the form. It is anticipated in the longer term a single national form will be available
and region wide support will be required to implement this.
Yorkshire Ambulance EoLC Pathway Yorkshire Ambulance Service, with the support of the District Nursing services
which offer 24/7 cover, has implemented a pathway that enables emergency crews to contact the DN rather than
transporting patients to Accident and Emergency, where clinically appropriate. YAS also have a dedicated EoLC work
stream with identified clinical champions. For further information contact Angela Harris Angela.Harris@yas.nhs.uk
Support required – Regional collation of issues and on-going service development and improvement for the service
is required. This would also include supporting the implementation of 24/7 District Nursing where it is not available.
YAS should be included in regional EoLC to inform service improvement from the transport perspective.
Care Home Education Project Multi Professional Education and Training (MPET) funding has been secured to provide
education and training for 800 care home managers and clinical EoLC champions. The programme includes making
links with local palliative care providers to facilitate shared learning. It is underway, projected managed by Skills for
Care and expected to be completed by the summer 2013. Contact for further information Anne Bagshaw
Anne.Bagshaw@skillsforcare.org.uk
Support required – Following completion of the project a mechanism to implement the recommendations and ensure
sustainability for the delivery of the education and training and the locality sharing good practice fora is required. Early
indications from the work so far highlight
 The need for effective GP, OOHs and DN support for care homes to prevent admission to hospital in the last few
days of life
 Anecdotal evidence that in some areas patients are being discharged from acute care to care homes (that are not
their usual place of residence) and die within a few days of admission
Clinically based education and training MPET funding is being used to provide education and training for clinical
teams in hospitals and community to support them to implement the EoLC tools into practice. This initiative began in
October 2012 and is expected to last into 2014.
Support required – Monitoring of the training delivered, implementation of the tools in practice and outcomes to
patients as part of the agreed programme. Following completion of the agreed training, recommendations are required
to promote sustainability of the use of EoLC tools in clinical practice.
Scoping EoLC Education
As the initial phase of the Yorkshire & Humber EoLC Education Scoping Project, a set of EoLC learning outcomes for
pre-qualifying programmes has been developed, setting out the learning outcomes achieved at the point of
graduation/registration and at one - two years post-qualifying. (See link below)
Learning outcomes
for EoLC.doc
Contact for further information Vanessa.Taylor@heacademy.ac.uk)
Support required - The following recommendations for on-going work were made:
 Mapping of EoLC learning outcomes against pre-qualifying health programmes for Medicine, Nursing and Allied
Health Professions across Y&H.
 Develop learning outcomes for continuing post-registration professional development including communication
skills, advance planning and symptom control.
 HEIs to make end of life content of current education and training programmes explicit to enable employers,
commissioners and prospective students to review content to meet current practice and policy drivers.
 Develop learning outcomes for support workers and influence inclusion in Apprenticeship/Education Frameworks
3
Clinical champions and acute hospitals work. A pilot project to develop senior clinicians as EoLC champions in Leeds
and Doncaster was undertaken. The two areas, with Bradford shadowing, are also involved in the on-going national
initiative to implement the Routes to Success guide in Acute Hospitals, including use of the AMBER care bundle.
Support required – A sustainable roll out plan is required to enable the learning from the pilot to be embedded into
acute Trusts to support improvements to EoLC particularly the identification of patients early, beginning relevant EoLC
conversations, communication with primary care and entering patients onto the local EoLC Register or Electronic
Palliative Care Coordination System (EPaCCS)
Renal pathway – A pathway for delivering palliative renal care for patients with end stage renal failure who choose not
to dialyse has been developed in conjunction with the Renal Network.
Support required – Monitoring the implementation and outcomes from using the new pathway
Information and data The EoLC PLB has been supported by the Public Health Observatory. An EoLC information
report has been developed which allows benchmarking across the area. The information is a valuable resource for
providers, commissioners and EoLC strategy groups. The first summary report and additional data is available on the
Quality Observatory website. www.yhpho.org.uk/ . This has been supplemented by reports with a regional focus from
the national VOICES survey, providing an invaluable insight into the local quality of services
Support required – A mechanism to enable on-going collation and distribution of the data to support service
development and commissioning.
Interactive Digital Training resource to breakdown EoLC Conversation Barriers
One of the main barriers identified is the lack of confidence of health and social care staff to start a conversation about
EoLC. A proposal has been agreed to develop an innovative and sustainable approach to provide education to reduce
the barriers.
Support required – The LETB to accept the proposal and agree the funding required, to tender for the work and
make the resource available.
Urgent Ambulance Transport service specification In collaboration with commissioners for the ambulance service from
NHS Bradford and Airedale, urgent transport requirements for patients at the end of life were included as part of a
draft specification for a new urgent transport service. This work has been handed over to East Riding CCG who will
be responsible for commissioning transport services on behalf of Y&H from 1st April 2013.
Support required – A mechanism to monitor the effectiveness of the service once implemented.
Bereavement The SHA supported the development of national quality measures for bereavement care and a
Y&H-wide specification for bereavement care services is available at www.ycn.nhs.uk.
Sharing Good Practice Annual Yorkshire and Humber-wide conferences have been held over the last 4 years. The
events have covered all aspects of EoLC with attendance from generalist and specialist staff across all care settings
including social care and care homes. The events have all had a focus on celebrating and sharing from the many
examples of good practice in EoLC from across the region.
e-Learning Taster Sessions for the national eELCA EoLC e-learning resources
To help learners start using the national e-learning resource, sets of ‘taster’ sessions have been developed for
different staff groups. These aim to be interesting to the learner encouraging them to use the resource further to
access learning tailored to their individual needs, be relevant to the particular staff group, have an appropriate level of
clinical content and have practical application to the learner http://www.endoflifecareforall.com.
Risks
The initiatives above have laid the groundwork for improvement with progress evident in an increase in the number of
deaths in the usual place of residence across Yorkshire and the Humber. This is a proxy measure for the whole endof-life care pathway and requires coordinated working across provider organisations. In addition the first national
carer’s survey ‘VOICES’, published in 2012, has provided a baseline for the quality for EoLC provided by PCT area.
Without a continuous focus on EoLC at both a local and regional level there is a significant risk that no further
improvements are made and there will be a reversal of progress made to date. The “support required” highlighted as
part of each work stream identifies the actions needed for the work to be sustained. If this is not forthcoming there is a
significant risk that the progress achieved so far would lost.
4
Recommendations for future EoLC Work
The following recommendations are for work on EoLC that is required both at a local and a regional level. These have
taken into account the main issues identified on page 2.
Local
The main priorities at a local level are for EoLC to be included in the work of Health and Well-being Boards, to be
considered as part of the Joint Strategic Needs assessments and to be high on the agenda for the commissioning of
effective services. This may require service re-design in some localities and good commissioning would include
 Use of the NICE EoLC Quality Standard for commissioning and monitoring service development and delivery
www.nice.org.uk/guidance/qualitystandards/endoflifecare/home.jsp.
 Coordination of services across health and social care and ensuring appropriate services are available 24/7
 Implementation of pathways of care for EoLC based on the national pathway outlines in the National EoLC
Strategy
 Implementing the National QIPP Key Performance Indicator (KPI) for EoLC into local KPIs, to increase the
number of deaths in the usual place of residence to more than 50% over 3 years, with consideration of the use of
annual targets.
 Using the national patient experience survey ‘VOICES’ to inform the prioritisation of service developments
required and to monitor quality of services provided. See link below to the national suggested trajectories for
improvements
YH SHA End of Life
Care legacy document march 2013 final draft12.xls


Implementation of locality registers using an Electronic Palliative Care Coordination System (EPaCCS) that
enables the collection of the national agreed Information Standard for EoLC. http://www.isb.nhs.uk/documents/isb1580/amd-11-2011/1580112011spec.pdf . Development of local EoLC services should use this data alongside
the patient experience data to measure quality of EoLC
Supporting the use of local data to benchmark localities across the region
Regional coordination
 Benchmarking across local areas using available data on outcomes, performance and patient/carer experience to
enable sharing of practice and supporting service development and care delivery. Currently this is supported by
the Public Health Observatory by using a range of data sets to interpret and provide clear analysis of the current
position at PCT level www.yhpho.org.uk/ working in tandem with clinical leads to ensure that the information has
clinical relevance and meets the needs of commissioners and providers
 The region-wide DNACPR form requires a regional group to ensure that it remains fit for purpose and to provide a
governance framework for its continued use
 Commissioning and monitoring the service for urgent transport at the EoL
 Education and training commissioning and coordination of delivery – to enable sustainable education and training
to be available for both the specialist palliative care and non-specialist EoLC workforce, to monitor current
programmes of work and their outcomes and to disseminate the learning from the innovative programmes
currently commissioned
 Implement a process to monitor achievement of EoL outcomes within HEI curricula at point of graduation for
medicine, nursing and allied health professionals and up to two years post-qualifying.
 Provide a mechanism to share EoL outcomes for Support Workers to inform and influence the development of
Apprenticeship/Education Framework for Support Workers
 Using the Education and Training Outcomes Framework in the development of future EoLC programmes etc.
http://www.hee.nhs.uk/work-programmes/education-outcomes/
 Providing a mechanism to share and implement national and local service improvement initiatives and good
practice e.g. AMBER Care Bundle, EPaCCS, 7 day working for Specialist Palliative Care and disease specific
EoLC pathways, such as renal and dementia
 Providing a mechanism for clinical engagement and clinical advice/leadership for commissioning and improving
services
 Providing a conduit for local and regional clinical and commissioning colleagues to steer the national agenda and
programmes of work at the NHS Improvement Board.
 Providing a mechanism to enable relevant patient information sharing to support coordination of care and prevent
inappropriate acute admissions for organisations working across a wide area e.g. patient flagging for the 111
service, OOHs GP services, A&E.
5
Improving EoLC – National Initiatives
Dying Matters – A national campaign coordinated by the National Council for Palliative Care (NCPC) to raise the
awareness of society around death and dying. www.dyingmatters.org/. Available resources include leaflets and
videos.
Find your 1% - A campaign by the national QIPP team targeting GPs to identify the expected 1% of their patients in
the last year of life. www.dyingmatters.org/gp
NICE EoLC Standard with 16 markers for EoLC delivery,
www.nice.org.uk/guidance/qualitystandards/endoflifecare/home.jsp.
Routes to Success – The national EoLC team has produced several guides to support the improvement of EoLC in
different settings and across professional groups, www.endoflifecareforadults.nhs.uk/tools/core-tools/rtsresourcepage.
These include care homes, acute hospitals, hostels for the homeless, people with learning disabilities, domiciliary
care, occupational therapy, nursing, environments and ambulance services.
Acute Hospitals
The NEoLCP has launched a ‘How to’ implementation guide, which aims to support acute trusts in implementing key
end of life care tools using the principles within the NHS Institute for Innovation and Improvement’s Productive Ward:
Releasing time to care™ series. This guide is available as an e-version, containing 14 podcasts. These cover topics
such as the ‘enabling’ tools, communications skills, DNACPR, environments of care, implementing care after death
guidance and the use of data and metrics: http://www.endoflifecareforadults.nhs.uk/publications/acute-rts-howtoguide.
Critical success factors using information from 7 PCT areas to improve EoLC,
www.endoflifecareforadults.nhs.uk/publications/critical-success-factors
Commissioning support for EoLC - There are a number of documents to support the commissioning of EoLC services
www.endoflifecareforadults.nhs.uk/commissioning. These include commissioning general EoLC services, specific
conditions and specialist palliative care. They also have available sample service specifications.
Data to support improvements in EoLC the National End of Life Care Intelligence Network has a number of tools that
provide information and data www.endoflifecare-intelligence.org.uk/home.aspx. These include EoLC profiles available
for Local Authority areas www.endoflifecare-intelligence.org.uk/profiles.aspx
E-Learning Resource (eELCA) – a free e-learning resource to help train health and social care staff to deliver high
quality end of life care. Over 150 e-learning sessions are available, covering 4 key topic areas – assessment,
symptom management, advance care planning and communication skills. Modules are accessed via ESR/NLMS for
NHS-employed staff, eLearning for Healthcare (http://portal.e-lfh.org.uk) for hospice, GP practice and other non-NHS
healthcare staff and via NMDS (http://www.nmds-sc-online.org.uk/) for social care staff. It includes a starter pack,
which will include a demo of some of the sessions (See also Taster sessions under Y&H initiatives).
Implementation of EPaCCS (Electronic Palliative Care Coordination Systems, formally known as locality registers)
The End of Life Care Co-Ordination: Core Content Information Standard sets out a core dataset of key information.
The standard is accompanied by implementation guidance on developing and using EPaCCS and on record keeping,
to help professionals working in a variety of settings make the best use of the electronic systems.
Bereavement Quality standards are currently in development and will be available on the national EoLC website
Useful contacts across the region
Regional –Y&H SHA Co Clinical leads: –
June Toovey – June.toovey@nhs.net Dr Fiona Hicks – fiona.hicks@leedsth.nhs.uk
South Yorkshire: Dr Anne-Marie Carey (a.carey@nhs.net), Ian Carey (ian.carey@barnsleyhospice.org.uk), Dr Kevin
Bolster (kevin.bolster@rothgen.nhs.uk), Judith Bird (Judith.bird3@nhs.net)
West Yorkshire, York and Harrogate: Charlotte Rock (charlotte.rock@bthft.nhs.uk), Penny Kirk (penny.kirk@nhs.net)
Humber & Yorkshire Coast: Anna Wolkowski (a.wolkowski@dovehouse.org.uk), Sherry McKiniry
(Sheriden.mckiniry@nhs.net)
Yorkshire and Humber Local Education and Training Board (YHLETB): Sharon Oliver – Director Education and
Quality Sharon.oliver@yorksandhumber.nhs.uk Grace Jeffrey Grace.Jeffrey@yorksandhumber.nhs.uk Michael
Holgate - Lifelong Learning Manager Michael.holgate@yorksandhumber.nhs.uk
6