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Award Report – Implementation phase
COVER SHEET Title: Shared Purpose Bringing Healthcare Home Abstract: This Project will improve the safety and quality of care for patients in their last year of life
by providing them with a single point of access and dedicated clinical support in their own home,
nursing home, hospice or community Hub using technology including telemedicine. Lead organisation: Airedale NHS Foundation Trust Partner organisations:
Organisation name Type of organisation Role in the programme
Airedale, Wharfedale and Craven CCG
Clinical Commissioning Group
Commissioner
Sue Ryder Manorlands Hospice Partner
BMDC Bradford Metropolitan District Council
Partner
York Health Economic Consortium
Academic evaluation Independent economic modelling and evaluation
Involve ( formerly Martin Dawes Solutions)
Technology provider Technology solution supplier
Red Embedded Technology provider Technology solution supplier
TPP – SystemOne Technology provider Technology solution supplier
National GSF Centre (Gold Standards Framework)
Community Interest Company
Partner
Date: 19/06/2014
Contents
1. Introduction ............................................................................................................. 3
1.1. Background knowledge and local problem .......................................................... 4
1.2. Intended improvement: aims and underlying theory of change ............................ 5
1.3. Expected learning .............................................................................................. 13
2. Methods ................................................................................................................ 13
2.1. Context .............................................................................................................. 14
2.2 Intervention ............................................................................................................ 17
2.3. Measurement plan ............................................................................................. 20
2.4 Evaluation plan ...................................................................................................... 22
3. Communication and engagement plan .................................................................. 22
4. Sustainability strategy ........................................................................................... 24
5. Spread and engagement strategy ......................................................................... 26
6. High-level timetable .............................................................................................. 27
7. Learning and development plan ............................................................................ 28
8. Key learning from set up phase............................................................................. 31
9. Early Findings........................................................................................................... 33
10. Engagement ......................................................................................................... 33
Appendix 1 – Evaluation ..................................................................................................... 43
Appendix 2 Fig 4 Medicines domains of quality ............................................................... 11
Appendix 3 Table 1: NICE Standards for EoL care ......................................................... 12
Appendix 3 EOL Pathway Vs Lean Tools ........................................................................ 14
1. Introduction
Since the original Shared Purpose bid gained approval from the Health Foundation, much thought
and consultation has been undertaken, to ensure that the proposal connects to the current local
health and social care economy wide Transform Programme End of Life project. This ensured that it
offered additional benefits rather than duplicating or complicating existing work streams.
The overall Shared Purpose bid objective of using technology was to help vulnerable patients at the
end of life to remain at home rather than being admitted to hospital. Following stakeholder
consultation, the original role of telemedicine will be less prominent and the project scope has now
been expanded to reflect a wider, whole system approach, which improves the alignment with the
Airedale NHS Foundation Trust hereafter (ANHSFT) Transform Programme.
There were a few reasons for this change. Firstly, there was a demonstrated need to clearly define
the cohort of patients who were considered to be approaching the last year of life. The development
of such an End of Life case load, shared across all health care settings, has had multiple benefits.
One of these is to provide a structured approach to recognising the patients who are most at need of
extra support so that telemedicine can be deployed to the greatest advantage.
The specific aims of the project were:
To develop an electronic caseload of patients who are thought to be entering the last
year of their lives and whose GPs are part of the Airedale, Wharfedale and Craven
CCG, Bradford District CCG and Bradford City CCG
To hold key information in the End Of Life (EOL) caseload regarding the patient’s
condition, their carer’s and their wishes (including their preferred place of death if
appropriate to discuss this)
To improve the experience of patients in the last year of life by improving coordination
of care across health care settings
To increase the number of patients who die in their usual place of residence (and so
reduce numbers of patients dying in an acute hospital bed) thus reducing hospital
admissions
To improve the experience for the families of patients in the last year of life by
providing support at the point of need
To reduce the number of days spent in an acute hospital bed for patients in the last
year of life
Specialist palliative care services across Bradford and Airedale have a well-established system of
communication and coordination, enhanced by the introduction of one single SystmOne unit, shared
by all specialist palliative care teams across each of the teams in the area. This allows each of the
teams to access patient information as and when required.
The established systems within the palliative care services work well, but only apply to patients under
the care of one of those teams. There are many patients in primary care that will be in their last year
of life, but are not under the care of a specialist palliative care service. Some of these will have been
identified by primary care teams and placed on a practice based EOL register (often referred to as a
Gold Standards Framework (GSF) register) but many will not have been identified as yet. If patients
are not identified as being in the last year of life, it is not possible to plan their care effectively and to
ascertain their wishes. This means that no information would have been available to out of hours
teams should the patient deteriorate. This illustrated the need to improve the co-ordination of care
between all of the teams who may have been involved in the care of palliative patients, not just
specialist palliative care teams.
One of? the aims was to provide a structured, consistent approach to recognising those patients that
needed extra support to ensure telemedicine could be deployed to its greatest advantage.
The setting up of a shared electronic register for patients in the last year of life is in itself was a
complex project. This was identified as the first workstream for the Shared Purpose project team.
The team established the baseline data of all acute medical admissions to the medical assessment
unit hereafter (MAU) between June and September 2011, who went on to die between that admission
and the following year. The data includes the mean number of bed days and hospital admissions; the
transfer of information between primary & secondary care and the number of patients who have their
preferred place of death recorded and whether this was achieved.
Aim of the audit:
To establish baseline data regarding:
The number of patients identified and documented as being in the last year of life
The mean number of bed days for patients in the last year of life
The mean number of hospital admissions for patients in the last year of life
The transfer of information between primary & secondary care when a patient has
been identified as being in the last year of life
The number of patients who have their preferred place of death hereafter (PPoD)
recorded and whether this is achieved.
Supporting staff to be confident and competent to start difficult conversations was the the second
workstream within the first year of our project and involved the Palliative Care Team working with
several corporate services including Human Resources and the Training & Education Department.
Thirdly, through the stakeholder workshops we have held, we now realise that once we had an
electronic register holding key patient information and wishes, with patients being appropriately
identified and consenting to become a part of the register, we could then begin to address
coordination of the care needs for this vulnerable group. This is the point at which we worked with the
Airedale Telemedicine Hub to develop a coordinating centre for all patients on the EoL register.
Initially this was to be offered to patients who had a GP in the Airedale, Wharfedale and Craven CCG
area but the was later to extended to include 2 of our neighbouring CCGs .
This change to the project scope resulted in a reduction of 10 telemedicine units from the original 40
that were planned to be deployed in the original bid. However the gain gave the team the opportunity
to offer co-ordinated, integrated support to the potential 1200 patients of Airedale, Wharfedale and
Craven CCG that could be on the EoL register, which was a key pillar of the health and social care
economies transform ambition for End of Life care.
1.1. Background knowledge and local problem
Since the publication of the National End of Life strategy in 2008 there has been growing recognition
of the need to improve the care of people approaching the end of life. People are ‘approaching the
end of life’ when they are likely to die within the next 12 months. This includes people whose death is
imminent (expected within a few hours or days) and those with:
Advanced, progressive, incurable conditions
General frailty and coexisting conditions that mean they are expected to die within 12
months
Existing conditions if they are at risk of dying from a sudden acute crisis in their condition
Life-threatening acute conditions caused by sudden catastrophic events.
It also covers support for the families and carers of people in these groups.
Most deaths (58%) occur in NHS hospitals, with around 18% occurring at home, 17% in nursing and
residential care homes, 4% in hospices and 3% elsewhere.
Although people’s preferences and priorities may change as death approaches, these changes will be
linked on occasion to the concerns regarding the availability of services for their preferred place of
care. The main findings can be summarised as follows:
Most people would prefer to be cared for at home, as long as high quality care can be
assured and as long as they do not place too great a burden on their families and carers;
Some research has shown that some people (particularly older people) who live alone, wish
to live at home for as long as possible, although they wish to die elsewhere where they can
be certain not to be on their own;
Some people on the other hand would not wish to be cared for at home, because they do
not want family members to have to care for them. Many of these people would prefer to be
cared for in a hospice
Most, but not all, people would prefer not to die in a hospital – although this is in fact where
most people do die.
A table of benchmark ratings for the PCT Clusters across 11 key questions was created with the top
20% shown as green and the lowest 20% shown as red. The 11 key questions are shown in figure 1
Fig.1 The diagram below (fig. 2) shows the findings for the Yorkshire & the Humber
Fig.2
Bradford and Airedale PCT did not achieve a Top 20% ranking for any of the questions and were in
the bottom 20% for A7, A9, A10:
A7. Patient was involved in decisions about care as much as wanted in last 3 months of life A9. Respondent considered patient died in the right place A10. Support for carers while patient at home – ‘as much as wanted’
1.2. Intended improvement: aims and underlying theory of change
The National End of Life Programme (http://www.endoflifecareforadults.nhs.uk) was established to
work with health and social care services to deliver the national end of life strategy. A number of
published reports have identified key priorities and a national end of life (Hereafter EOL) pathway has
been developed. The scope of the EoL strategy is very ambitious and ranges from:
working on a cultural shift in society to accept that death is a normal part of life
to identifying patients who are thought to be entering the last year of life
to care for that patients’ family around the time of, and after, the death
ANHSFT recognised the importance of providing excellent and well-coordinated EoL care and
working on a local solution to the national EoL strategy by establishing this as 1 of 5 priorities in the
Transforming Community Services programme (now part of the health and social care economy
Transformation and Integration Programme). At the end of 2011 an EoL strategy group for ANHSFT
was initiated. This group consists of members from across the whole health and social care economy
and has written a local EoL pathway with key areas of work identified.
In 2011, the National Institute for Clinical Excellence produced an End of Life care quality standard1
setting out how a high quality end of life care service should be organised. This is summarised in
Appendix 3
The first national VOICES (Views Of Informal Carers for the Evaluation of Services) survey of
bereaved people: key findings report (2012) was commissioned by the Department of Health in line
with a commitment made in the End of Life Care Strategy (2008).
Specific aims:
To develop an electronic caseload of patients who live in AWC CCG or AWC and the 2
Bradford CCGs who are thought to be entering the last year of their lives
To hold key information in the EOL caseload regarding the patient’s condition, their carers
and their wishes (including their preferred place of death if appropriate to discuss this)
To improve the experience of patients in the last year of life by improving coordination of care
across health care settings
To increase the number of patients who die in their usual place of residence (and so reduce
numbers of patients dying in an acute hospital bed)
To improve the experience of families of patients in the last year of life by providing support at
the point of need
To reduce the number of days spent in an acute hospital bed for patients in the last year of
life
In June 2012 an audit of Airedale General Hospital Emergency Department (ED) Attendances from
Nursing and Residential Homes took place. The aim of this audit was to look specifically at the
reasons behind ED attendance in the nursing and residential home population and to identify patients
who could have benefitted from end of life care planning.
The findings of the audit were that all patients who attended the ED from Nursing and Residential
arrived by ambulance. There are a number of patients who could receive safe assessment and basic
wound care in the community either by nurse practitioners or even first responders leaving only
people who are in pain, bleeding profusely or who require sutures being transferred to the ED.
There are missed opportunities for end of life care planning because staff from Nursing and
Residential Homes felt compelled to call 999 rather than speak to a GP first or request a home visit for
the patient.
20 out of the 36 cases were patients who presented to the ED out of hours of which only 3 of these
had been seen first by the GP in the community.
In one month’s worth of data there were 2 patients who had advanced end stage disease who were
brought into the ED in extremis. In an ideal world both of these patients should have had an end of life
care plan with the option of dying at home with dignity.
Before the Shared Purpose Programme example Below is an example of ‘A Day in the Life’ for an End of Life patient. This reflects what can sometimes
happen due to the lack of a joined up service.
1 National Institute for Health and Clinical Excellence MidCity Place, 71 High Holborn, London, WC1V 6NA;
http://www.nice.org.uk/nicemedia/live/13845/60321/60321.pdf
Future state of Shared Purpose Programme example
Below is an example of ‘A Day in the Life’ for an End of Life patient. This reflects what could happen as a
result of the Shared Purpose Programme.
Post implementation case study with an I-Pad Here follows a brief case study from one of the GoldLine Telehub Nurses
Mr X was provided with an I-pad to enable a video link into the telemedicine hub to provide support
both clinically and psychologically for himself and as importantly for his wife and daughter with whom
he lived – they provided the majority of his care.
His I-pad was installed and in use from 15th May 2014 until June 18
th 2014 of this month when he
sadly passed away. He experienced the service for 5 weeks in total.
The family used the service approximately 20 times in total throughout the 5 week period. Initially
using it just when extra support was needed, increasing to them calling through twice daily in the final
week of his life.
Throughout my interactions with the family not only did I feel it provided them with practical solutions,
but also the fact they had someone to talk too about what kind of a day they were having and share
their feelings also seemed to help enormously.
My final conversation with the family was the morning when Mr X had sadly passed away. They had
been having difficulty getting through to the Gp surgery to request a visit for verification. Tearfully,
they called via the I-Pad explaining their situation, with their final words being; “We called you
because we knew that you always know what to do to help us – we knew you would help”
Our theory of change used the Model for Improvement2 as the framework to guide the improvement
work, see figure 5.
Through this frame work each small change went through a small model of improvement cycle (Plan,
Do, Study, Act – PDSA) allowing for development, adjustment, refinement and change to happen. It
was a cumulative impact of these changes as they came together that helped deliver each individual
project. All the changes made within each project was then combine to achieve the overall aim of the
Brining Healthcare Home programme (fig. 5)
Fig 5 Langley GL, Nolan KM, Nolan TW, Norman CL, Provost LP. The Improvement Guide: A
Practical Approach to Enhancing Organizational Performance (2nd edition). San Francisco: Jossey-
Bass Publishers; 2009.
The team anticipated that the patient experience would be improved by bringing care to the patient in
their own environment, simplifying care pathways (with fewer steps to get from A to B), and reducing
their need to travel to hospital.
The team also expected the project to deliver whole-system cost savings as a result of reductions in
time needed for caring tasks, avoidable admissions and inpatient care.
Whilst the current 3 Workstreams are within the implementation stage work continues to ensure
successful implementation and sustainability.
Change is a fundamental component of continuous quality improvement. Any improvement
methodology involves introducing change and measuring its impact. Implementation of improvement
Bringing Healthcare Home
Projects
Changes
projects and sustaining the resulting change can be a difficult process. It has been stated all too often
that quality improvement projects fail on a regular basis.
The key to implementing change and continuous improvement is the effective exchange of
information between people and process, a combination of business and human dimensions towards
a shared objective has proved to be successful within this project, to ensure sustainable
implementation.
Implementation Challenges & Mitigation Plans
The ANHSFT EoL strategy group considered the EoL pathway, the NICE quality statements and was
informed by a stakeholder event held in August where a world café type exercise was carried out
using Lean tools with the plan section within the PDSA cycle.
An in depth report written by the NHS Bradford and Airedale Managed Clinical Network for palliative
care was also taken into account prior the event.
Attendees were asked.
Identify a quality standard for the end of life adults.
Statement 1 People approaching the end of life are identified in a timely way
Discuss the quality standard for the end of life adults
Statement 2
People approaching the end of life and their families and carers are communicated with, and
offered information, in an accessible and sensitive way in response to their needs and
preferences.
Implementation Challenges & Mitigation Plans
Risk Likelihood Impact How will this be mitigated and/or managed?
H M L H M L
Lack of adoption by the operational
team
X X Engagement
Key workstreams led by
champions (e.g. matrons)
Technology providers cease to
trade
X X Business continuity plans
Credit check
Lack of adoption by patients X X Education
Public Relations
Use cases
Cost exceed income and benefits X X Manage cost budget
Measure benefits realised
Tariff does not change to reflect the
change in service
X X Lobbying with department for
health
Publishing success stories
Patient clinical governance issue X X Governance arrangements in
place
Lack of adoption for EPaCCS X X Engagement
Education
Public Relations
Use cases
Failure of CCGs to commission/No
extra funding for Telemed Hub
X X Evidence base being
established
Alternative sources of
investment being pursued
Below is a programme logic model depicting a high level summery of what was expected.
Outputs Outcomes
Context Input Activities Participation Short Medium Long
Priorities
Vision
Intended
Outcomes
What we invest
Staff
Time
Money
Technology
Equipment
Etc.
What we do
Enable
coordinated
care for
EoL
patients
across local
health
economy
What we need
Patient
Clinical Teams
GP’s
Support
Services
Managers
Commissioners
Change In
Knowledge
Skills
Attitudes
Motivation
Change In
Behaviours
Practice
Policies
Procedures
Change In
Pathways
Assumptions External Factors Following the event the 3 works stream were born.
Workstream 1: Developing the EOL caseload (Electronic Palliative Care Coordination System) Palliative care services across Bradford and Airedale had a well-established system of communication
and interoperability, recently enhanced by the introduction of one single SystmOne unit, shared by all
palliative care teams across each of the trusts in the area. This allows each of the teams to access
patient information as and when required.
The established systems within the palliative care services work well, but only apply to patients under
the care of one of those teams. There are many patients thought to be in their last year of life who are
not under the care of a palliative service. The End of Life Care Strategy (2008) identified the need to
improve co-ordination of care between all teams, which may be involved in the care of palliative
patients, and not just specific palliative care teams.
This then led to the idea of establishing an Electronic Palliative Care Coordination Systems hereafter
(EPaCCS) as a mechanism for enabling coordination. The development of such an End of Life
hereafter (EoL) caseload shared across all health services and, with a vision of expanding to the
social care settings would ensure multiple benefits.
It is known that approx. 1% of the population die each year. It is not known accurately how many of
this 1% dies suddenly without a recognisable EOL phase. However, it is thought to be in the region of
0.75% of the population as a minimum. So the aim was to have around this number of patient
identified on our EPaCCs.
The table below show these figures in context of the surrounding CCGs
CCG Population 1% 0.75%
AWC CCG 156,000 1560 1170
Bradford District CCG 330,000 3300 2475
Bradford City CCG 118,500 1185 889
TOTAL 604,500 6,045 4,533
In the interim the aim was to have at least 0.2% AWC patients on the case load within the first 12
months; this will be measured on a monthly basis within the telehub and reported to the steering
group.
Workstream 2: Difficult Conversations Training Research and local experience tell us that health care professionals need training and support to
enable them to start conversations around death and dying with patients. There are many reasons for
this. If patients and their families are to benefit from the support offered and to enable them to plan
and express their wishes, the very first step on the EOL pathway is a sensitive conversation. The
benefit of identifying patients and placing them on an EOL caseload is only fully realised when the
patient themself is aware of the serious and complex nature of their condition. Clearly the quality of
this conversation is vital and should mark the beginning of the process for advance care planning,
supporting the patient and their family through the difficult time ahead and helping them to think about
their wishes.
Many senior health care professionals working in the cancer arena have received advanced
communication skills training. However, the majority of more junior ward based nurses had not had
this opportunity. There were a variety of ways that this could have been provided, these were all been
considered by the Shared purpose project team and the EOL workstream and the following plan was
made.
Aim to provide basic training for 150 HCP in the first 12 months.
To include staff employed by ANHSFT based in the community and the hospital
Workstream 3: Developing on EOL coordination of care hub Whilst there are many services available in our locality to support patients facing the end of life, the
services were not working together in the most efficient joined up way. Patients and families
frequently had to have several phone numbers to use to call a variety of different services out of
hours. Many of these services did not have ready access to the patient’s end of life wishes, even if
these had been recorded. Inevitably there were delays between a patient calling for help and a health
care professional being available with advice.
Rather than the traditional uncoordinated, fragmented route, an alternative solution for patients and
carers was to contact the EOL Hub which would act as a single point of access with a senior nurse
taking calls 24/7. This would offer immediate advice and support and act as the gateway to various
services that were available to support patients at home. We anticipated this to be the point at which
hospital admissions would be avoided.
The spread phase locally looked at using the same framework to support patients with Long Term
Conditions and their carer’s with a view to widening the geographical net for the End of Life patients.
Whilst the team thought they knew what needed to happen, they also needed the actual design of the
service to be designed by the patient and carers.
An event was held
Patient, carers and the team generated ideas of how it would work and the name of the GoldLine was
born.
By using patient and carer’s experiences this has evidenced that previous systems required
improvement.
Bereavement relative’s survey has also evidenced areas within the service for improvement; this has
also confirmed the 3 Workstreams are relevant for future proofing a good service for patients, carer’s
and their families. All patients who are registered with the EOL caseload will receive the GoldLine
information.
1.3. Expected learning Patient/Carer Experience across MDT/ Organisational pathways
Engagement, relationship building and partnership development with stakeholders
Linking Clinical Teams and Corporate teams to deliver projects
2. Methods This project provides innovative support to patients, allowing them to get on with their daily lives and
access consultant-led healthcare at a time to suit them, which avoids unnecessary hospital
admissions.
Participating patients would still need to visit the hospital at some point. However, the telemedicine
pathway is expected to reduce the number of hospital visits by 50%.
The scheme provides a direct telephone line known as the GoldLine for all EOL patients and video
links for 30 patients with 24-hour access to specialist clinical and care teams. Patients and families
will receive the scheduled and urgent support they need to remain safely at home, as well as medical
advice and support. Where a patient needs physical intervention, the system is linked up to
community-based teams, who can provide fully integrated care.
If a patient does need to be admitted to hospital, the scheme will facilitate early supported discharge
with a particular focus on family-centred care, boosting partnership working with families, carers and
the patient.
Initially, the service will be offered to selected patients on the End of Life Register.
The project will be evaluated through a series of key performance indicators please refer to the
Appendix A Evaluation Plan from York Health Economics Consortium Ltd
2.1. Context Understanding the commissioning structures that ANHSFT works within has been relevant to the
planning and the delivery of EOL services and thus of direct importance to this project.
Airedale hospital is located within West Yorkshire but is very close to the borders of both North
Yorkshire (Craven district) and East Lancashire (Pendle locality). The main commissioners of hospital
services to date are as follows:
PCT Cluster % of hospital workload
NHS Airedale, Bradford, Leeds PCT Cluster 60%
NHS North Yorks and York PCT Cluster 30%
NHS East Lancs PCT Cluster 10%
Airedale NHSFT catchment area.
In terms of EOL care services for Airedale hospital, most of the planning and service development to
date had been done in partnership with the then Bradford and Airedale PCT ( the precursor to NHS
Airedale/Bradford/ Leeds PCT Cluster), via the Managed Clinical Network for Palliative Care.
Working relationships in EOL care with Craven were less well-established and even less so for East
Lancs.
With the abolishment of PCTs and establishment of Clinical Commissioning Groups (CCGs), the
commissioning arrangement for ANHSFT from April 2013 was significantly different as follows:
NHS Airedale/Bradford/Leeds PCT cluster has split into a number of shadow CCGs including for the
Bradford and Airedale patch:
Airedale, Wharfedale and Craven (AWC) CCG: as well as having responsibility for Airedale
and Wharfedale populations, this CCG will also took over responsibility for Craven, which
previously fell within the NHS North Yorks and York PCT Cluster boundary
Bradford District CCG
Bradford City CCG
NHS North Yorks and York PCT Cluster have split into 4 shadow CCGs with the Craven district
combining with Airedale and Wharfedale (as above) into a cross boundary CCG configuration.
NHS East Lancs. CCG Cluster became a single CCG with 5 localities, of which Pendle is the main
one of relevance to ANHSFT
The situation is even more complex in that the Local Authority boundaries are not coterminous with
the CCGs. Bradford Metropolitan District Council, North Yorkshire County Council and Craven District
Council serve the population of the AWC CCG. Patients from East Lancs are served by both Pendle
Borough Council and Lancashire County Council. All five councils operate individual Health
Overview and Scrutiny Committees.
Planning effective EOL care within the new structures, therefore, the programme stakeholders had to
take into account the following:
The new AWC CCG serves the majority of the hospital catchment but some patients will still
come from the neighbouring Bradford District and East Lancs. CCGs
ANHSFT employs all community nursing and other community staff serving the entire
Craven district. However community provision for the Airedale district is fragmented,
following the PCT’s decision to transfer the majority of their community services to Bradford
District Care Trust (including the Hospice@Home team), with the remainder spread between
ANHSFT, Bradford Hospitals NHS FT and a number of GP practices. Airedale received the
Airedale Community Collaborative team in the transfer.
There is a historical precedent of planning EOL services in Airedale and Bradford jointly via
the Managed Clinical Network; this can fairly easily extend to include Craven but East Lancs
remains completely separate. There are advantages to continue to plan services with
Bradford due to the strength of relationships in place and the relatively small numbers of
health care professionals working in EOL to improve services.
IT systems A key feature of this project has been about coordination of care and the use of shared IT systems
has been a crucial part. Complexities around different organisations using differing IT systems that do
not demonstrate interoperability also added to the challenges of providing seamless care across
organisational boundaries.
In November 2012 ANHSFT implemented a new SystmOne patient administration system. This
implementation, delivered in partnership with technical partners TPP and Accenture, was an important
step in delivering the Trust’s ambition to improve the patient experience. Through this development –
one of the first in the country - we are able to enhance integrated care for the local population as we
now have the basis of an electronic shared record with primary care. This has been a very exciting
development and has played as a key enabler to support the ambition for seamless end to end care
for our patients. The potential benefits of sharing information for EOL patients have been significant
within our project.
EOL service providers have designed and started to implement an EOL template held within the
SystmOne patient record; this template holds key information about patients’ needs and preferences
for their care. Access to this template information is crucial for decision making and is available to all
staff at the point the patient makes contact.
Work still continues with the ambulance services, out of hour’s providers and social care to enable
appropriate access to EOL information. However, if the EOL Hub provides 24/7 access, these teams
can access this information via the Hub if not directly on their own systems. This still requires patients
to inform these services if they are on the EOL register, which has proven to be successful to date.
NHS 111 The national initiative to implement a new phone number for urgent medical help and advice in non-
life threatening situations was implemented. This system is currently linked to a local ‘directory of
services’ suggesting that patients can be signposted to appropriate local services. The effectiveness
of this has been initially successful, but there have been instances where vulnerable patients at the
end of life have not been able to offer the appropriate support and admission avoidance that we were
aiming for. Following consultation with 111 it was agreed that the GoldLine would provide support for
these patients and support for 111 staff to be able to redirect any EOL patients from our geographical
area to the hub. The relationship between ANHSFT and 111 has proven to be successful with
constant communication’s to ensure a sustainable process.
Integrated Care Teams Another significant initiative being implemented which has had a bearing on the success of our
projects is the piloting of integrated care teams in the Airedale locality. New integrated care teams
have been formed and new ways of working have been introduced, 7 day working being one of them
and there is now palliative care nurses working from the Telehub on a weekend offering help and
advice to both patients and staff.
The Gold Standards Framework (GSF) The Gold Standards Framework (GSF) has a systematic evidence based approach to optimising the
care for patients nearing the end of life delivered by generalist providers that are concerned with
helping people to live well until the end of life and includes care in the final years of life for people with
any end stage illness in any setting.
GSF improves the quality, coordination and organisation of care in primary care, care homes and
acute hospitals. This enables more patients to receive the type of care they want, in their preferred
place, with greater cost efficiency through reduced hospitalisation.
The objectives of the GSF fits entirely with the health and social care economy’s objective of
improving EOL care for the local population. The GSF central team has developed programmes
designed specifically to improve EOL care in whatever setting the patient is in.
The GSF for primary care has been established within primary care in the Airedale area for several
years. Each general practice has, to some extent, an involvement with the GSF programme.
However, the quality of the GSF programme is extremely variable between GP practices and on-going
work to support practices to develop their GSF programmes have been needed to progress over the
duration of the Shared Purpose project. The plan to introduce the EOL register, provide
communication skills training and set up the Telemedicine Hub as a coordinating centre complements
completely the aims of the GSF project. The GSF for Acute Hospitals (GSFAH) Airedale NHSFT has been running a pilot project on 2 wards in the hospital, identifying, assessing
and starting to plan care for EOL patients. Plans were place to provide facilitation to roll out this pilot
across the whole hospital during 2013. Again this tied in perfectly with the aims of the Shared
Purpose project.
The use of the GOLD theme had several advantages. It conveys the appropriate message to patients
that, because of the complex nature of their needs, they require a GOLD standard of care. Because of
the spread of the GSF across all care settings, health care professionals also understand what this
term means. Hence the reason why the project team chose to call the Telemedicine Hub EOL
coordinating centre the GoldLine Telehub and the single point of access line the GoldLine.
2.2 Intervention Workstream 1: Developing the EOL caseload (Electronic Palliative Care Coordination System) This first workstream ran simultaneously with the other two work streams to deliver a seamless
service. The development of the EOL caseload brought together the internal and external IT services
with ANHSFT Palliative Care Team and GP’s to develop the solution. This allowed more people to die
in the place of their choosing with an aim to potentially reduce emergency hospital admissions and
reducing length of stay, increase patient experience and allow patients to be cared for in their
preferred place.
There were several key elements to this:
a. Developing a software solution to hold the caseload. This had a working group. Key
members were IT providers at NHS Bradford and Airedale, ANHSFT, Dr Andrew Daley
(Consultant in Palliative Medicine who has worked on the EOL template to date), Dr Ian
Fenwick (Clinical Lead for EOL care representing AWC and 2 Bradford CCGs), project
manager and clinical lead for Shared Purpose project. Following the initial meeting there
was a consensus achieved that this was desirable and achievable.
b. Joining up all the individual EOL caseloads which were held by individual organisations into
a single EPaCCs (GP practices, district nursing teams and the acute hospitals). Once the
electronic caseload software was in place, the adding of identified patients onto the case
load began. Patients were identified by those who required adding onto the Gold Standards
Frame Work and had been given the Goldline information and sticker. An electronic referral
was required where possible to add patients to the caseload.
c. Identifying patients to go on the EPaCCs. There are 3 groups of patients who were
considered here:
All patients already referred to specialist palliative care services automatically qualified
as needing to go on the EPaCCS. It was thought that this would be relatively
straightforward but would need dedicated admin time
All patients currently on either a primary care/acute hospital teams GSF register but not
known to specialist palliative care. This required GP practices/acute hospitals to share
this information to the EOL hub so that their patients could be entered onto EPaCCS. It
was made possible to develop an automatic entry created directly from the GP electronic
record.
Patients who are not yet identified as being in the last year of life by any health care
professional but who should be. Educational activity and support to generalist teams by
EOL facilitators started to reduce the numbers of patients not on registers who should
have been.
Registering patients onto EPaCCs This is being completed by the person identifying the patient at the time that happens, referrals are
currently being accepted by a dedicated administrator.
Agreeing with all register holders to share information via the register.
o Work was planned by way of a communications plan and attendance to the LMC to
get all primary care teams on board with the advantages to patients of being on the
EPaCCs, and to allow their information to be shared. The parallel worksite to develop
the EOL coordination Hub, accessible only to patient who are on the EPaCCS helped
this. There were existing structures in place to engage with primary care teams and
these are currently being utilised to develop this.
Using the current EOL template that exists on SystmOne as the way to record key EOL
information. The EOL template held key EOL information and was starting to be used more
widely; existing mechanisms were used to continue to promote the use of the template.
Health care professionals can see that this information is available to, and used by, the EOL
Hub to help good decision making out of hours we envisaged they would be more motivated
to populate the template with the appropriate information.
Ensuring that appropriate regard is made to information governance issues especially
around sharing of patient information and obtaining patient consent to share. These are
complex issues and will be addressed by the EPaCCs working group, learning from other
teams that have addressed and resolved these issues. The idea of primary care teams
sharing confidential information to other health care providers was initially very foreign and
apparently unacceptable to GPs, however this is a rapidly changing situation and other
related initiatives are starting to challenge this view.
Training There is only a small number of staff assigned to work directly on the new caseload and therefore the
training requirements were minimal. Staff assigned to work on the unit received the most appropriate
form of training from the Palliative Care Consultants .
Work stream 1 the end of life caseload 12/2013 Following the initial plan of this workstream and in line with the gold line it was decided that the group
no longer needed a separate EOL caseload as the staff within the telehub would be putting all of the
GSF patients onto their case load which would be a duplication. This has reduced some of the initial
costs budgeted for this work which was supported by the CSU. (Please see budget plan). The same
vision and work still applies.
As the technology and information governance structures were being put in place to build a shared
electronic register, work began on providing training to support and enable staff as they started to
identify suitable patients and begin to have sensitive discussions regarding their prognosis and future
wishes. Patients were asked to consent to have their information added to the shared database (EOL
register) so health care professionals needed to feel able to have these conversations confidently and
sensitively
If we were to enable more patients to die in their preferred place (usually home or nursing/residential
care home) we needed to be aware of what that preferred place was. If this was recorded, we could
start to compare their wishes against what actually happens and then measure post improvements.
Workstream 2: Difficult Conversations Training The SAGE & THYME
® foundation level workshop teaches up to 30 people in 3 hours, the skills
required to provide psychological support to people who are concerned or distressed.
The SAGE & THYME training was developed by members of staff at University Hospital of South
Manchester NHS Foundation Trust (UHSM) and a patient in 2006. Its aim is to teach the core skills of
dealing with people in distress. It was originally developed to meet the level 1 skills requirement
described in the 2004 NICE guidance on ‘Improving Supportive and Palliative Care for Adults with
Cancer’.
The level 1 guidance states that all health and social care staff should be able to:
recognise psychological distress
avoid causing psychological harm
communicate honestly and compassionately
know when they have reached the boundary of their competence.
The SAGE and THYME workshop reminds staff how to listen and how to respond in a way which
empowers the patient. It discourages staff from ‘fixing’ and demonstrates how to work with the
patient’s own ideas first.
The workshop is taught to any member of staff (e.g. healthcare assistants, nurses, allied health
professionals, doctors, and administrators) in contact with distressed people (not just patients) and in
any setting (e.g. hospital, patient’s home, nursing home, hospice, social care).
The workshop is evidence based and has been shown to significantly increase confidence and
perceived competence in talking to people about their emotional troubles. Research funded by a
TRUSTECH Pathfinder Development Fund award has tested whether the training increases the
knowledge and skills of those taught and whether the SAGE & THYME model is used after the
training. The findings were very positive and the results have been submitted for publication.
A full description of the model can be found in the following paper: Connolly M, Perryman J, McKenna
Y, Orford J, Thomson L, Shuttleworth J, Cocksedge S. (2010). SAGE & THYME: A model for training
health and social care professionals in patient-focussed support. Patient Education and Counselling;
79: 87-93.
SAGE & THYME foundation level workshop will trained - up to 30 delegates (including the 11 people
who attended following SATFAC course)
Posters were placed on corridors, ward areas and various other departments. Communication plans
were also put in place to ensure all community areas were covered as well as opening up to Sue
Ryder, social services and volunteers sector. Backfill for staff was provided, communication through
staff brief to advertise training and GSF facilitator advertised on ward areas, Stall set up to promote
Sage and Thyme. Evaluation following each session was collected and post course evaluations
collected every 2 months after the initial session.
SATFAC attendees as part of the agreement signed up to completing 3 sessions per year each, 1
session per month will be delivered and 150 HCP was the initial aim to be trained in the first 12
months.
Workstream 3: Developing on EOL coordination of care hub The aim was for the hub to hold EPaCCs, giving the senior nurse instant access to the recorded EOL
wishes of any patients who called.
Subgroups of patients on the EOL caseload were to be offered telemedicine units.
Key staff looking after EOL patients in the community is the district nursing teams. We provided these
teams with access to mobile telemedicine units so they could connect to the Hub directly with any
concerns about EOL patients.
The Aims for the hub were:
All patients on the EPaCCs will be given a telephone number to the GoldLine.
Patients will be encouraged to use this number to access ALL health care needs out of
usual office hours (the Hub will replace the initial call to GP OOH services, DN out of hours
services with the aim to cut down on use of 999 and 111 calls)
Other services, such as the ambulance service and other health care professionals in the
hospital and the community can also use the Hub as a centre for advice and access to other
services
OOH district nursing teams will have mobile telemedicine unit to access the Hub
Selected patients will have telemedicine units as well as the telephone line
The calls will be taken by nurses who will have had training in EOL care and will be
supported by a palliative care consultant on call at all times
The Hub will remain accessible to carers for a period of time after the death of the patient
(possibly for 4 months). The Hub will act as a coordination point for bereavement services
during the 4 months following the death of the patient
We anticipated that initially support from the Hub would be in the form of a 24 hour/7 day per week
telephone clinical advice service for all patients on the EoL register. However, a subgroup of the most
needy and vulnerable patients would then be identified and additional support via telemedicine
consultation would be offered to these patients up to 30 units.
This use of the Telemedicine Hub represents the third workstream of the first year within the project
and aimed to see the corporate service of Human Resources, Training & Development,
Communications Team and IT service all working together with the Palliative Care Team and external
stakeholders.
Strategic monthly meetings took place with various members attending.
CCG for AWC
GP
Clinical Leads
Project Manager
Community Managers
Executive Lead
Sue Ryder
Patients
Carers
Patient Experience Lead
Finance
Telehub Manager
Gold Standards Framework Facilitator
Service Improvement Manager
A communications plan and action plan was put in place with a launch date of 3rd
November 2013.
2.3. Measurement plan As each of the initial Workstreams evolved it was expected that they would identify measures as part
of the Lean Model for Improvement, this included identifying and collecting the baseline metrics.
Below are the initial considerations for measures for the 3 Workstreams and how they aligned to the
Institute of Medicine’s domains of quality.
Table 3: Bringing Healthcare Home Measurement Plan
Measure Data Source
Frequency &
Data
Reporting
Process
Baseline
Eff
ecti
ven
ess
Eff
icie
nc
y
Eq
uit
y
Pati
en
t C
en
tere
dn
ess
Safe
ty
Tim
elin
es
s
Workstream 1 Identify - EPaCCS
Number of patients
on the EPaCCS
Patient
Administration
System
Monthly
Number of patients
on the EPaCCs as
a % of the
population covered
by the EPaCCS
Patient
Administration
System
Monthly
Number of patients
on the EPaCCs
who have a
preferred place of
death recorded
Patient
Administration
System
Monthly
Number of patients
on the EPaCCs
who die in hospital,
home (including
care home) and
hospice by CCG
Patient
Administration
System
Quarterly
Number of patients
on the EPaCCS
who die in their
preferred place
Patient
Administration
System
Evaluation
report
Number of patients
on the EPaCCS
who die within 12
months
Patient
Administration
System
Evaluation
Report
Workstream 2: Difficult Conversations Training
Measure Data Source
Frequency &
Data
Reporting
Process
Baseline
Eff
ecti
ven
ess
Eff
icie
nc
y
Eq
uit
y
Pati
en
t C
en
tere
dn
ess
Safe
ty
Tim
elin
es
s
Number of
attendees
Attendance
register Monthly 0%
Attendees
feedback
Evaluation
Form Monthly 0
% of attendance Register Monthly 0
Post Course
Evaluation
Evaluation
Form Monthly 0
Workstream3: GoldLine
Measure Data Source
Frequency &
Data
Reporting
Process
Baseline
Eff
ecti
ven
ess
Eff
icie
nc
y
Eq
uit
y
Pati
en
t C
en
tere
dn
ess
Safe
ty
Tim
elin
es
s
Number of patients
on the GL caseload
who have been
given the dedicated
telephone line
number
Patient
Administration
System
Monthly
Number of calls to
the hub from EOL
patients
Patient
Administration
System
Monthly
Outcome of the call
to the hub
Patient
Administration
System
Monthly
2.4 Evaluation plan Please refer to the Appendix A Evaluation Plan from York Health Economics Consortium Ltd for full
plan.
Baseline data of details of the costs of the hospital resource used by patients included in the Last
Year of Life Audit have now been collected. The patient data was gathered from the hospital patient
administration system and was collated and analysed to show the costs of admissions for each
patient during their last year of life. This data will be used as part of the interim and final evaluations of
the project which is funded by the Health Foundation. It is planned to carry out an interim evaluation in
autumn 2014. This will involve comparing this baseline data with data gathered on a further cohort of
end of life patients who died between May and July 2014. The comparator cohort will include people
who experienced the interventions implemented through the Shared Purpose project:
Implementation of the Goldline system;
Enhanced training for staff in discussing end of life issues with patients and carers;
More comprehensive coverage of the end of life register.
These interventions were put into place in November 2013. The interim audit will involve people for
whom only part of their final year of life was spent with the new system in place. The final evaluation
will be carried out during 2015 and will involve a further cohort of end of life patients who will have
spent their full final year of life with the new system in place.
Work is on-going and YHEC is currently discussing the availability of data on primary and community
care resource use to supplement the secondary care data. If this data can be gathered from the local
Data Services for Commissioners Regional Office (DSCRO) administered through the Commissioning
Support Unit.
3. Communication and engagement plan
Stakeholder Engagement
Stakeholder group
Involvement Advantages for this group
Anticipated challenges for this group
Patients Involved in pilots and
operational delivery (nursing
homes, long term
conditions)
Representatives involved in
project management and
co-creation
Improvements to patient
experience
Significant benefits to patients
not being admitted
End of life care plans realised
Personalised care
Cultural change to
traditional pathways
Carers Involved in pilots and
operational delivery (nursing
homes, long term
conditions)
Access to clinical advice and
support when they need it
Cultural change to
traditional pathways
Representatives involved in
project management and
co-creation
FT governors Briefed on developments
and attended
demonstrations
Governor rep on Project
Board
Gain assurance re new service
deliver
To retain oversight role
and not get involved in
detail
Local
Authority/Social
Care
Briefed on developments
and attended
demonstrations
Will be interested in
exploring potential for care
home residents
Opportunity to integrate health
and social care for vulnerable
people
Opportunity to make better use
of resources
Barriers to pooling
budgets
Pressure to slash and
burn
Stakeholder
group
Involvement with the
proposal to date & in the
future
Advantages for this group Anticipated challenges for
this group
Stakeholder group
Involvement Advantages for this group
Anticipated challenges for this group
PCT / CCGs /
GP practices
Briefed on developments
and attended
demonstrations
Some have commissioned
Telehealth services
Will want to be involved in
project development and
monitor results and
outcomes
Opportunity to review impact on
high priority patient group
Scepticism from some
GPs who have had
previous poor experience
of poor telemonitoring
deployments
Fear of change
Voluntary sector Briefed on developments
and attended
demonstrations
Some are involved in
directly supporting this
group of patients eg
Macmillan, Sue Ryder
Will want to be involved in
shaping service
Opportunity to integrate and be
part of offer in integrated
approach
Capacity to get involved
Lack of financial resource
and short term funding
Community
Services
Briefed on developments
and attended
demonstrations
Some are involved in
directly supporting
Telehealth Hub by providing
nurse triage service
Will want to be involved in
shaping service
Opportunity to integrate and be
part of offer in integrated
approach
Fear of change
Internal
Workforce
Briefed on developments
and attended
demonstrations
Some are involved in
directly supporting
Telehealth Hub by providing
nurse triage service
Opportunity to integrate and be
part of offer in integrated
approach
Scepticism in some staff
groups
Fear of change
Will want to be involved in
shaping service
Technical
Partners
Already involved in
deployments
Opportunity to support at scale
deployment
Customer focus for
vulnerable elderly
Media Press Release Opportunity to share what we
are doing
Keeping it up to date
4. Sustainability strategy Moving from using the bid money to enable a ‘proof of concept’ to a sustainable model funded
through a commissioned service by CCG(s). We are completing the model below to ensure
sustainability.
Sustainability is the key to create a solid network of relationships with the stakeholders, whose
engagement has been fundamental, by implementing a Sustainability Model that allows managing the
complexity of the contexts in which Airedale operates and the challenges that Sustainability has to
afford.
Stakeholders representing a wide range of interests from patient through to commissioners, all of
which are important for the Sustainability of the project. Establishing and maintaining lasting
relationships is playing a critical part for the long-term Sustainability of the project. That is why the
Stakeholder Engagement is fundamental to understand needs and priorities of every figure involved in
the shared purpose bringing healthcare home project.
Sustainability Plan Component /Method
Action Steps
Timeline
Action (RAG)
Develop: Mission,
Vision,
Case for Support
Talk to staff and community members about
why this program is needed, who will benefit,
why Airedale is the best Trust to undertake
GoldLine and Sage and Thyme Training.
3 months Complete
Identify and talk to informal community
leaders who have common vision/mission.
3 Months Complete
Research and
identify potential
stakeholders
Talk to local Gp’s and CCG’s about how the
program can benefit their interests and
Patients.
1-Month Complete
membership
includes all
relevant
stakeholders
Communicate with
stakeholders
Introduce program to local media. Provide
tour of telemedicine hub to staff, patients,
GP’s, CCG’s and press, and news release.
3 Months
and launch
in
November
2013
Complete
Initiate relationship
with stakeholders
Schedule community/partner strategy group.
4 Month Complete
Select team of helpful community members,
and patients / carers to strategy group.
Formulate meeting agenda.
4 Month Complete
Continue to
cultivate
stakeholders
Hold events. Include shared vision exercise
to get input and expand vision to more
stakeholders.
2 month Complete
Create buy in
Summary of event highlighting groups that
participated
2 Month Complete
Make the ASK
Determine best strategic partnerships and
key community leaders to involve.
4 Month Complete
Determine appropriate level of collaborative
commitment to ask for.
5 Month Complete
Determine who should ask for partnership
involvement. Jointly develop strong “case” for
potential partner’s involvement. Being
specific about level of commitment
requested.
5 Month Complete
Continue to cultivate current partners and
new stakeholders through:
• Offering opportunities for continued
involvement in shaping the program through
regular meetings and dialogue.
• Sharing the credit.
• Celebrating small successes. • Making
sure program is mutually beneficial to all
partners.
8 Month
on-going
Complete
All of the above was repeated at year 2 and will be repeated at year 3
The project is also using The Sustainability Model as a diagnostic tool that is used to predict the
likelihood of sustainability for the project.
The structure of the Guide mirrors the ten factors identified within the NHS Sustainability Model. In
doing so, it creates a comprehensive package consisting of a diagnostic model and guidance for
sustainability. The tool will
Self-asses against a number of key criterion for sustaining change
Recognise and understand key barriers for sustainability, relating to their specific local context
Identify strengths in sustaining improvement
Plan for sustainability of improvement efforts
Monitor progress over time.
Preliminary evidence suggests a score of 55 (currently 94.5) or higher offers reason for optimism.
However factors which have the greatest potential for improvement is infrastructure which scored
lower in June 2014 due to current staffing levels which is currently being rectified.
5. Spread and engagement strategy Good patient and public engagement (PPE) makes it easier to create change and savings because
clinicians, managers and lay people have been working together for a commonly valued objective. By
talking to our patients, carers, community staff, internal staff and commissioners and listening to what
they told us about what could be improved, through events and having the correct membership on the
steering groups has been essential.
By continuing to make sure people understand what they have contributed, what has changed and
the benefits of through various communication channels has been a large aid to the spread and
engagement strategy.
By using the Engagement Cycle as illustrated above, which is a strategic tool that helped the team
understand who needs to do what, in order to engage communities, patients and the public at each
stage of commissioning. By working through the 5 stages this has evolved the engagement plan.
By the level of organisational structure results can be shared trust wide and beyond. This has led to
an interest from 2xBradford CCG’s.
6. High-level timetable Figure 1 outlines the environment in which the Bringing Healthcare Home project was built and
delivered. Figure 2 illustrates a high level timeline for each phase taking the project through to
completion in 2015
Corporate Strategy
Directing The ProgrammeDirecting The Programme
Start Up Embed SpreadImplementation
Managing Product
Delivery
Planning
Establish Project
Board
Raise awareness
Ensure all
stakeholder
involvement
Identify
appropriate
patients
Agree Technical
Setup
Monitor KPI’s
Identify and open
an additional local
hub
Identify next
patient group
Review KPI’s
Launch next
patient group
Share experience
and knowledge
with peers
Arrange
installation of
home kit
Go live with
technical
infrastructure at
Airedale General
Hospital
Go live with both
identified patient
groups
Fig 1
Fig 2
7. Learning and development plan
Knowledge Capture Event 23/06/2014 18/11/2014 17/02/2015 19/05/2015 18/08/2015 17/11/2015
Future dates have been set for specified knowledge capture time as previously this was collected on
an ad-hoc basis. This arrangement did not seem to work as it was felt that people did not speak
openly. Following the learning event 19th March 2014 it was decided to hold various knowledge
capture events throughout the year, for sharing best practices, accelerating progress, and discussing
successes, failures, and experiences.
Results from KC event held 23/06/2014 Following the KC sessions with the Heath foundation the group decided to hold some events within
the trust. Below in the diagram you can see the common themes which were captured in the session. The KC
was discussed up until the 1st part of implementation, further events have been arranged to capture
further implementation, funding and spread and embed.
The service Improvement team facilitated the event. Below demonstrates the journey of the project
and the coloured lines indicate the attendees journey of learning throughout each step.
Representations of the Workings behind the Shared Purpose Project are as follows:
The train track/route = EXEC SPONSOR & CCG’S,
The train driver = CLINICAL LEADS,
The mechanics/maintenance = PROJECT MANAGEMENT & SERVICE IMPROVEMENT,
The train/vehicle = TELEMEDICINE & HUB,
The carriage/passengers = COMMUNITY SERVICES, GP PRACTICES, SUE RYDER AND
MANORLANDS HOSPICE, PATIENTS AND CARERS, FINANCE.
With the train/track lines all leading to the same station, known as the right care which is the
patient/carer.
l
BID
PROJECT TEAM
SET UP
PLAN
IMPLEMENT
SUSTAIN
SPREAD &
EMBEDINITIAL TEAM
SET UP
Airport
Ferry
Shopping centre
Petrol station
Hospital
N
S
EW
N
S
EW
Skyscraper
Factory
Train station
Telemedicine
Project Management
Service Improvement
GP’s & Practices
CCG’s
Community Services
Exec Sponsor
Clinical Leads
Patient & Carer Panel
Finance
Patients & CarersSue Ryder & Manorlands Hospice
KEY TO LINES
Ann Wagner
Linda Wilson
Mel Bagot
Karen Dunwoodie
ALL/Rebecca Fyffe – Conversation Notes
Trudy Balderson
Lizzie Procter
Jane Walton
Michelle Mansour
HEALTH FOUNDATION, SHARED PURPOSE PROJECT – KNOWLEDGE CAPTURE EVENT HELD 23RD JUNE 2014
THE LIFE OF SHARED PURPOSE TUBE MAP, CREATED BY REBECCA FYFFE
N
S
EW
BID
STARTING
POINT
DIRECTION
RESEARCH
IDEAS
REFUELING
TRANSFORMATION
OVERCOMING
OBSTICLES
PRODUCTION
CONTROL
POINTS
TRAIN
STATIONS
PROJECT
ROUTE
RIVERSPREADING
COMMUNICATION
INITIAL BID
ROUTE
High-level time table below demonstrates the development plan pre and post implementation. Monthly
catch up call with Tavistock have now ceased and it was decided that the CCG joined the Shared
Purpose steering group on a monthly basis to enable feedback, knowledge capture and sharing best
practice
Learning and Development Plan Event Stakeholders Purpose Occurrence
Initial Launch Airedale NHS Foundation
Trust Staff:
HR
Finance
IT
Planning and Performance
Patient & Public
Engagement
Business Development
Clinical representatives
Introduction to Shared Purpose 28th May 2012
Workshop Core project Team Introduction to Shared Purpose 18th & 19
th of June
Introduction to
Share Purpose
– Our Journey
so far
Airedale NHS Foundation
Trust Staff
Community
PCT
Care Home
Introduction to Shared Purpose 24th July
Launch – Have
your say
Airedale NHS Foundation
Trust Staff
Community
PCT
Care Home
GP
Social Care
To officially launch the Shared
Purpose project and to look at what
elements should be part of the project
29th August
Summit Local Acute Trusts
Community
PCT
Care Home
GP
Social Care
PCT SDG Airedale, Wharfedale and
Craven CCG and Airedale
NSH Foundation Trust
16th Nov
Peer Review Sheffield,
Northumbria,
NETS,
Airedale
Oxford
To support and challenge teams and
organisations to develop their delivery
plan and meet the Health Foundation
requirements
19th Nov
Core Project
Team
Programme Manager
Clinical Lead
Weekly review of the programme Weekly
Catch Up Programme Manager
Clinical Lead
To have a ‘catch up’ with Tavistock Monthly
Extended
Project Team
End of Life Strategy Group Bi Monthly
AWC SSG SDG Airedale NHS Foundation
Trust
AWC CCG
Along with the AWC CCG having
representation at the End of Life
Strategy Group we have agreed a
more formal feedback session
6 monthly
8. Key learning from set up phase
The Health Foundation 06/05/2014 32/59
1. Implementation of 111has proved challenging for end of life patients being sent straight to hospital
as there was no provision being made for these patients. Work continues with 111, CCGs and GPs to
improve the experience for patients and their carers, our gold line development is in response to
patient feedback.
2. Implementation 111 update May 2014 whilst work has been continuing with 111 the project now has
a structured process for when EOL patients ring 111, patients from our geographical area are now
directed to the Gold Line. The hub staff also have a direct line to local care direct which enables
advice and an out of hours GP visit where necessary.
3. SystmOne Enhanced Data Sharing Model which allows patients to give consent for their detailed
care record to be shared with NHS organisations and teams, giving people control over who
contributes to and views their record. GPs have raised concerns as they now have to obtaining
consent from every patient which is “a huge piece of work for practices”, identifying which information
patients wished to withhold and which they were happy to share. This has had an adverse impact on
the project resulting in a resistance to accept the Electronic End of Life register. The assistance of
having a clinical lead for the project has been imperative, the clinical lead and the GP have been
visiting local GPs and with excellent communication which has resulted in attitudes starting to change.
4. The Liverpool care pathway
The government confirmed the controversial Liverpool Care Pathway was to be withdrawn following a
national review. There was an initial feeling that is this could spark mistrust in patients and their
families.
There is only one chance to get care right at the end of any person’s life. It is at the heart of all caring
professions that patients must be treated with dignity and respect, and that means that all treatment
had to be properly communicated.
To combat this issue we continued with the “Difficult Conversation” training for staff. NHS England
has given guidance recommending continued good clinical care for dying patients particularly in
hospitals. We await a response from the government to report and further recommendations from
NHS England, which will then be used as guidance within our gold standards framework programme.
We will continue to provide a high standard of clinical care for our patients using best practice
guidelines.
5. Patient and Carer involvement
Putting patients first is a priority for Airedale NHS Foundation Trust. Involving patients and their
carer’s in developing and evaluating this shared purpose project has been an integral part. Engaging
patients and carers was not always a comfortable experience for the team, and we did not always get
told what we wanted to hear, but without the views and opinions, we could not ensure that our service
is truly patient led. We have learnt involvement is not about power but rather the added value it
provides to ensure the service is efficient and effective. To involve and empower our patients and
carers has shaped our priorities as well as helping us to achieve individual health and well-being and
to ensure sustainable systems of the future.
The commitment shown by patient and carers has been overwhelming, with patients in particularly
taking time out of their last few weeks of life to aid the development of the service for future patients,
carers and family.
The carer input has also been invaluable to the work, and the commitment shown has been
astronomical with carer’s reliving the last few days of their partners life.
Likewise patients who are still with us and attend the meetings, due to their illness get tired and this is
a big strain on them. However the patients still continue to have an input and this spurs the team on to
ensure the project is a success. Patients involved will always be at the forefront of everybody’s minds
and we hope to continually improve the service above and beyond the life of the project.
We have also learnt that sometimes the view of patients and carers differ with patients being more
care focused i.e. giving patients the right care at the right time in the right place and carers being
concerned around support and who to contact when in difficulty and to ensure there is one point of
contact where possible.
Airedale NHS Foundation Trust will continue to be a motivated organisation and as leaders, we will
aim to set out key standards through patient, carer and public involvement. This will enable us to
achieve our vision of Bringing healthcare home enabling people near the end of life to carry out their
wishes. We will continue to work in partnership with our key stakeholders and in particular by placing
patients, carers firmly in the centre of our decision making within the programme.
This has highlighted patients’ experience as a key driver for change.
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The project will continue to absorb that patient and carer involvement is a valuable source of
information, which is able to provide an insight into their needs and requests, and feedback on their
experiences.
6. Executive support
Having executive support has been essential for the project both strategically and operationally and to
have the drive to implementation has been invaluable.
The executive sponsor has been actively engaged and helped to get the right people involved in the
project team and across the health and social care economy.
7. Clinical Lead
Clinicians are playing a vital role in driving improvement.
As the clinicians are the people working directly with patients, they are the ones who can really
improve care at a local level. It has been vital that the project has clinical leads which have ensured
that clinicians working in all parts of the system are engaged, enthused and supported so they feel
confident to take on responsibility for the improvements in clinical care.
The project is demonstrating just how much can be achieved when clinicians are fully engaged and
lead service improvement.
Our work so far has given us insight not only into the different ways of improving but also into the
many challenges clinicians face when trying to bring about change, for example ensuring that
clinicians have allocated time to be able to support the project.
Funding from this project for 2 clinical leads was agreed and is proving fundamental to the successful
delivery of the project.
8. Project management and non-clinical support
Efficient and effective project management has been essential to the success of a project like ours,
the change in project management could have been a set back – however the commitment from the
new project manager and support from the core team and Tavistock consulting resulted in a smooth
transition and stronger governance.
Support from wider corporate services (e.g. Finance, Service Improvement, Nursing, IT,
Communications and Patient Involvement) has been essential. Capacity is sometimes and issue for a
small trust like ours with many calls on the corporate services.
9. Tavistock Consulting (Sue Machel and Bernie) support and mentoring is also proving invaluable, not
least the encouragement to reflect and consider knowledge capture, which is becoming “how we do
things around here”
The support given to the project manager from Bernie and Sue has been second to none and has
highlighted the relevance of having Tavistock within the Health Foundations Shared Purpose work.
10. Engagement
Engagement takes a long time and has to be done in multiple ways before people understand the
message, the baseline is always changing- the way the nhs works, team members, organisational
structures etc.is constantly changing and you have to keep reviewing and modifying your plans to
meet the changing baseline.
The communication of this has been the biggest part of the project, but because we are aware of this
we have been able to accommodate the changes outlined in this paper.
The initial success of the gold line has been down to good communication to ensure engagement.
9. Early findings The programme has now completed a number of cycles of the PDSA Cycle and is continuing within
the implementation stage of the project.
The team have also met with YHEC and agreed a set of Quantitative data for the evaluation and this
has been updated within the Evaluation plan. Quantitative methods are sometimes associated with
the scientific and experimental approach and can be criticised for not providing an in depth
description, however to address this issue the team have now arranged for a local university student
to collect some data using qualitative methods which are more concerned with describing meaning,
rather than with drawing statistical inferences. The student is currently conducting patient
questionnaires and interviews not that dissimilar to the experienced based design model. (Innovation
and Improvement, Institute for, 2010. The ebd approach. 1st ed. Coventry: Innovation and
Improvement.)
In short the project on a whole continues to adopt a combination of qualitative and quantitative
approaches, which will allow statistically reliable information as well as providing a more in depth and
rich description.
The Health Foundation 06/05/2014 34/59
Karen Dunwoodie, Patient Experience Lead at Airedale NHS Foundation Trust, facilitated 2 focus
groups on 4th and 5th February 2013 with patients who were attending day therapy sessions at
Manorlands Hospice. The purpose was to find out levels of satisfaction the patients had experienced
during different parts of the patient pathway to try and identify any areas for improvement. A similar
pattern of discussion was followed on each occasion.
At each session, four patients participated. We agreed confidentiality, so their names have been
changed. For the purpose of this paper on the first day they were Lily, George, Bill and Frank. On
the second day they were Joan, Dennis, Ethel and Roger. Each had an illness that meant the
likelihood that their life span was much reduced.
The raw data from the focus groups has been discussed at the End of Life Strategy Group; the
Shared Purpose Project Stakeholder event; and the Shared Purpose Project Steering Group. It was
agreed to be vital that issues highlighted by the people who took part in the focus groups, were given
consideration by professionals from the different services involved in their patient journey and acted
upon. In view of this, we have highlighting themes and recommendations.
The majority of comments are extremely positive. Some examples are: -
• “The District Nurse was fantastic. She was caring, attentive. I felt as though it was me she
had come to see, not any old patient. I mattered to her” (Community nursing care)
• “It has been good to raise the issue of funeral arrangements and to find ways of discussing
this with the family”. (Hospice care)
• The GP has been great and even delivered my prescription to my home. I couldn’t wish for
better” (GP care)
• I feel that I have been part of the decision making throughout all parts of my care and that I
have been listened to and the doctors have acted on my choices” (all care)
The more negative comments fall into four themes that run through all the different services. They
are: -
1. Inconsistency of professionals seen and information given
“There is no consistency when trying to see a GP”
“Most of the GPs are part time so you never get to see the one you want”
“The doctors aren’t able to determine what is going on from their computer screens. You should have
one doctor who gets to know you. In this way you will feel more confident”
“There are a lot of junior doctors in at weekends and then through the week the Specialist disagrees
with what the juniors have said, but I suppose that is the only way they will learn”
2. Having to wait
“It is horrendous getting an appointment at the GPs. It can take over a week to get to see a specific
doctor”
“It takes ages for the telephonist to answer the telephone and when they do, they have a poor
manner”
“It was a long haul going through Ward 15, the assessment ward, with a lot of waiting”
3. Not being seen as a ‘whole’ person
“In hospital doctors focus on their area and don’t look at the whole person, whereas in the hospice,
my consultant looks at me holistically and all the different parts of my body that need attention.
Someone like that fills you with confidence”
“It would be much better if all health professionals were immediately aware of all your care needs and
wishes, so you did not have to repeat it all the time”
“I know the district nurse links in to the GP and the hospice and the palliative nurse so that everyone
is kept informed and they are treating me in a holistic way. This is very reassuring”
4. Poor communication
The Health Foundation 06/05/2014 35/59
“When in hospital, information leaflets aren’t given soon enough. You are kept in the dark and told
someone will come to see you – they pass it on. Even though Airedale doesn’t have a cancer ward,
they should still give out the information”
“I now get loads of information but it didn’t come quick enough and at the right time”
“At the beginning you feel overwhelmed and staff should spend more time with you to explain and
provide information to help you understand what is happening and what it all means. Otherwise you
worry about things they are not telling you”
“I hadn’t realised I had cancer until a MacMillan Nurse telephoned me. She spoke to me on the
telephone inappropriately as if I knew, telling me I would need a hysterectomy”.
Recommendations for action have been given for each service area involved which has supported the
drive of the shared purpose project. Working on the following recommendations where possible some
of the recommendations are being addressed in the 3 workstreams.
All of the workstreams are currently driving forwards with project plans, process mapping, design
workshops, risk and issue logs and regular meetings all in place.
Community Nursing Services
1 Share the good practice reflected within the full focus group report.
Hospital Services
1. Seek ways of improving consistency of information from the different professionals involved.
2. Seek ways to improve patient contact time and speed up waiting times - Consider designated
beds for GSF patients.
3. Give focus to better record keeping to avoid the necessity of patients being asked to repeat
information over and over again to different professionals - Progress to using System1 as a clinical
record in the hospital.
4. Consider the level and quality of written and verbal information given to patients at the
different stages of their illness.
Hospice
1. Share the good practice reflected within the full focus group report.
All services
1. Consider which staff will be suitable to undertake the Sage and Thyme communicating skills
training that will be available in the near future.
2. All professionals making clear notes on patient records so that it is known what information a
patient has been given.
The workstreams continue to move forwards by having the right people in the room for the strategy
meeting has proved to be an essential part for the workstreams being able to escalate any problems
and also give advice
Work stream 1 the end of life register Palliative care services across Bradford and Airedale have a well-established system of
communication and interoperability, recently enhanced by the introduction of one single SystmOne
unit, shared by all palliative care teams across each of the trusts in the area. This allows each of the
teams to access patient information as and when required.
The established systems within the palliative care services work well, but only apply to patients under
the care of one of those teams. There are many patients thought to be in their last year of life who are
not under the care of a palliative service. The End of Life Care Strategy (2008) identified the need to
improve co-ordination of care between all teams, which may be involved in the care of palliative
patients, and not just specific palliative care teams. This led to the idea of establishing EPaCCS as a
mechanism for enabling coordination.
The Health Foundation 06/05/2014 36/59
Description Progress Rating
Programme initiation
document to be completed
Complete
End of Life Template to
complete
A new version of the End of
Life (Hereafter EOL) template
is now available
An EOL lead GP to be
identified
An EOL lead GP has been
identified for each practice in
AWC CCG.
Creation of a register for
people with less than 12
months to live
Complete
Engagement with all services
expected to use the EoL
register
Complete
GSF registers in individual
practices and the acute
hospitals will be joined up to
become a single EOL register
(EPaCCS)
15 practices have been
funded to do “Going for gold”
training so this will help the
practices to identify more EOL
patients
To give the hub access to the
palliative care unit
complete
Access to the register, for all
teams/service, who may be
involved in the patients care.
complete
Implement use of the register
by relevant organisations.
Complete
Early findings and problems with systems being unable to communicate with
each other has proved to be problematic.
Excellent communication has been made for AW&C GP’s by the clinical lead and GP’s.
Various meetings and actions were undertaken to iron out the problems of the communication of the
system and some process regulatory work is underway.
The caseload was ready in line with the Gold line hub timeframe.
Baseline audit collecting Quantitative data of 100 patients has now been collected and is currently
being finalised. We await the results. Information such as:
Admission date
Cause of death
Place of death
Number of non-elective admission in 12 months prior to death
Number of bed days 12 months prior to death
Number of admissions 6 months prior to death
Length of stay
Route of admission
Do hospital notes identify last year of life
If LYOL was it discussed with patient
Was patient on the GSF register
As well as various other questions.
Work stream 2 Communication Training
The benefit of identifying patients and placing them on an EOL register is only fully realised
when the patient themself is aware of the serious and complex nature of their condition. Clearly the
quality of this conversation is vital and should mark the beginning of a process of advance care
planning, supporting the patient and their family through the difficult time ahead and helping them to
think about their wishes. The SAGE & THYME® foundation level workshop teaches up to 30 people in
3 hours, the skills required to provide psychological support to people who are concerned or
distressed.
Description Progress Rating
Complete train the trainer Sage & Thyme communication
The Health Foundation 06/05/2014 37/59
programme for 12 staff training took place 11th, 12th &
13th June 2013, 11 trainers
have been successfully trained
and licenced to deliver the
course,18 further staff members
where trained on the 1st day of
the foundation level.
To set up training sessions for a
12 month period
The trained staff will be running
12 sessions per year (3 each)
open to all Airedale staff, Social
Services & Bradford Care Trust,
GP’s and Practice Managers.
Training dates are in the diary
for the next 12 months.
Advertising campaign Advertising campaign underway
by way of flyers in all ward
areas, Social services and Gp
practices– evaluation has been
collected from the 1st training
session.
Finance Finances have been agreed
and budgeted for training and
backfill of staff (to release staff
to go on the training). The
training is aimed at band 5/6
staff nurses, hcsw, and ward
clerks.
150 staff to be trained in 1st
year within the Trust
On-going to date 142 clinical
staff have been trained
Devise template of a post
evaluation after 2 months of
each session
Complete
Arrange To complete a post
evaluation after 2 months of
each session delivered.
Complete
Following collection of qualitative data of the training the following graph shows the results.
Quantitative data is also being collected for this work stream showing to date 212 staff members have
been trained as of June 2014.
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As you can see from the graph above the feedback of the sage and thyme, there is a very positive
response following the workshops. The data also suggests that the workshops had a significant
positive effect on recommendation, showing 208 attendees would recommend Sage and Thyme to
others.
Some comments from attendees are as follows:
“I am a qualified counsellor so the marks in changing my practice do not reflect how I respect the
principle of the course which would be 9-10/10”
“Found the training very informative & highlighted where I can improve”
“I think the facilitators were very proactive and this was presented very well with all the key points of
the training being re-iterated/reinforced in a timely manner”
“Excellent training, every NHS member should have the training”
“Very interactive which I enjoyed - enhances learning/skills to take away”.
The early findings of the workstream are the difficulties of releasing staff to complete the training
session. To combat the issue we have put funding in place to backfill staff, posters on wards and
posters within the community this currently has proved non eventful, however with the correct
communication of staff actually attending the wards and promoting the training has had an effect.
Upper control limit Lower control limit Mean Standard Deviation
95.50 46.66 71.08 8.14
Whilst the monthly sessions are being fully booked staff do not always attend the sessions, the
sessions are currently showing an average of 71% attendance rate of staff booked onto the course.
The Health Foundation 06/05/2014 39/59
The above graph shows the designation attendance at each workshop. Including all the workshops to
date the numbers are as follows: Nurses = 67, District Nurses = 20, HCSW =38, Therapists = 15,
Student Nurse = 2, and Clerical/other = 70.
The total number of clinical attendances to date is 142.
The total number of attendance including clerical and other staff to date is 212.
Workstream 3 The GoldLine Following the great success for the telehub event and feedback from patients
Patients should be looked at holistically (as a whole – not just the section of the patient that comes
under our care).
Rather than the traditional uncoordinated, fragmented route, an alternative solution for patients and
carers is to contact the Gold Line Hub which will act as a single point of access with a senior nurse
taking calls in out of hours. They will offer immediate advice and support and act as the gateway to
various services available to support patients at home. We anticipate this will be the point at which
hospital admissions will be avoided.
Description Progress Rating To design stickers for hub Complete To design patient and
healthcare information
Complete
To communicate to relevant
stakeholders
The Gold line has been
communicated with the CCG,
GP’s, 111 and local care
direct.
To train hub nurses Complete Register all AWC EOL
patients to hub system1
caseload
Complete
Review of workload of hub
nurses in evening shift
Assurance that sufficient
staffing to safely man gold
line needed
Complete
Recording of all call to the
gold line for quality
monitoring and training
On-Going
System to track how long
goldline rings before it is
answered, also need to agree
a standard
On-Going looking into a call
management system
Distribute stickers and leaflets Complete
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to DN, Comm. matrons, pall
care CNS, hospital pall care
team, GSF facilitators,
hospice at home team, GPs, hospice
There has been a large proportion of patient and carers engagement with this service following the
design event held 19th April 2013.
Having the right people on the workstream team i.e. hospice staff, patients, carers, clinicians, CCG’s,
Dr’s, community staff as well as hospital staff has been the key to the speed of the implementation of
this workstream.
Current problems are similar to the situations with workstream 1 of the communication between the
EPaCCS module of SystmOne and the Telehub module and are being addressed within the
undergoing work within workstream 1
The Gold Line went live on the 1st November 2013 with a successful launch event on the 4
th
November 2013. The event was documented within the local press
http://www.thetelegraphandargus.co.uk/news/10786961.Helpline_is_launched_to_provide_support/?ref=rss http://www.cravenherald.co.uk/news/10789780.Airedale_Hospital_helpline_set_up_for_seriously_ill_patients/?ref=rss http://www.ilkleygazette.co.uk/news/news_local/10796214.Airedale_Hospital_launches_helpline_for_seriously_ill_people/?ref=rss
The Health Foundation 06/05/2014 41/59
The Gold Line was officially open by Jane Walton our carer representative. The event was well
attended.
Here follow some early audit results. From the data below, the Gold Line has received 410 calls to
May 2014 for AWC patients. The data also shows 36 avoided admissions indicating that the patients
that did call received care in the place of their choice.
A Telehub operations group now meets every monthly to tackle any issues, frustrations and solution.
Currently plans are in place to develop some case studies to follow the patient’s story.
A story book is also currently being designed to tell the story of the Gold Line from the 1st design
event to the launch. Jane Walton quoted “I am trying to explain to all those who have no idea where
and how such projects are started. To me, I looked at it like West end Show....but it’s not until you
read the programme that you realise how many people it takes to put on a show”
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The graph below shows a total of 60 A&E Attendances Avoided with a mean of 8.57 per month.
Please note this process has special cause variation present indicating that the process is
unpredictable. The reasons for the special causes are yet to be identified and removed from the
process if this is unacceptable. Due to this more than 60% of points are outside of the middle third of
UCL - LCL
Description Progress Rating To design stickers for hub Complete To design patient and
healthcare information
Complete
To communicate to relevant
stakeholders
The Gold line has been
communicated with the CCG,
GP’s, 111 and local care
direct.
To train hub nurses Complete Register all AWC EOL
patients to hub system1
caseload
On-Going
Review of workload of hub
nurses in evening shift
Assurance that sufficient
staffing to safely man gold
line needed
Complete
Recording of all call to the
gold line for quality
monitoring and training
Complete
System to track how long
goldline rings before it is
answered, also need to agree
a standard
On-going
Distribute stickers and leaflets
to DN, Comm. matrons, pall
Complete
The Health Foundation 06/05/2014 43/59
care CNS, hospital pall care
team, GSF facilitators,
hospice at home team, GPs,
hospice
Next steps for the Gold Line The next steps for the Gold line are to continue implementing telemedicine in 30 patient’s homes. This
service will be offered to patients currently registered on the GSF.
The telemedicine ipads have now been installed into 28 patient’s homes with positive results. Please
see link below directing you to a short video.
http://www.airedale-trust.nhs.uk/services/the-gold-line/
Appendix 1 – Evaluation
AIREDALE NHS FOUNDATION TRUST
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Bringing Healthcare Home: Evaluation
Draft Evaluation Framework
Nick Hex, Project Director Darren De Souza, Senior Consultant
20 November 2012
All reasonable precautions have been taken by YHEC to verify the information
contained in this publication. However, the published material is being distributed
without warranty of any kind, either expressed or implied. The responsibility for the
interpretation and use of the material lies with the reader. In no event shall YHEC be
liable for damages arising from its use.
Contents
Page No.
Section 1: Introduction 2
1.1 The Bid to the Health Foudation 2
1.3 Development of the Bringing Healthcare Home Project 3
Section 2: YHEC Evaluation 5
2.1 YHEC Evaluation Objectives 5
2.2 YHEC Evaluation Methodology 5
Section 3: Data Collection 8
3.1 Data Collection Needed 8
Section 4: Evaluation Timeline 10
4.1 Evaluation Timeline 10
Section 1 2
Section 1: Introduction
1.1 The Bid to the Health Foundation
Airedale NHS Foundation Trust (ANHSFT) submitted a bid to the to the Health Foundation’s
Shared Purpose programme in January 2012. The bid outlined the aim of the Bringing
Healthcare Home (BHH) project, which is to “improve the safety and quality of care for
patients undergoing cancer treatment or in the last year of life by providing them with
dedicated clinical support in their own home, nursing home, hospice or community Hub via
telemedicine.”
The overall aim of the BHH project is to deliver a hospital at home service for the most
vulnerable patients by delivering clinical care through telemedicine. The bid explained that
24-hour video links between the patient and clinical or care teams would enable patients and
families to get the right support whilst remaining at home. Furthermore the BHH project
aims to build greater co-ordination between corporate and clinical teams and to enhance
patient experience.
The rationale behind the BHH project is that healthcare services will need to be more
resilient to pressures from rising demand and financial constraints. The project aims to
achieve this by delivering higher quality to patients, being more efficient and developing
more integrated models of care. By releasing time to care, reducing avoidable admissions,
reducing patient travel and providing care at home, ANHSFT anticipate they will also deliver
cost savings.
The BHH project builds on the work undertaken by the Airedale Telehealth Hub. The Hub is
based at ANHSFT and currently provides services to patients with long term conditions,
living in their own homes and in nursing homes and care homes in parts of Airedale,
Bradford and Leeds. It also provides services to patients through some GP practices, a
community hub, a hospice, and a prison throughout the geographical area served by
ANHSFT.
The bid was successful and the confirmation of approval from the Health Foundation was
received in May 2012. The Health Foundation will provide funding and technical support
over three and a half years, with the first 6 months being used to develop a Shared Purpose
Delivery Plan for the Health Foundation. The first interventions through the BHH project are
due to commence in January 2013. The Shared Purpose Delivery Plan will include an
evaluation framework and this document provides the basis for that, describing the work that
York Health Economics Consortium (YHEC) will undertake and the data that the project
team will need to collect.
Section 1 3
1.2 Development of the Bringing Healthcare Home Project
Since the bid was approved, ANHSFT have engaged key stakeholders in a series of
meetings and workshops with support from the Tavistock Consulting. These meetings and
workshops have been part of the initial process of developing the Shared Purpose Delivery
Plan. Emerging themes from this work have given greater clarity to the actions needed to
improve the experience for patients in their last year of life.
The BHH project is being aligned to ANHSFTs End of Life Care Strategy and the on-going
wider work to integrate health and social care with partner organisations in the NHS and
local government. The ANHSFT End of Life Strategy Group is the delivery group for the End
of life workstream, one of 5 workstreams in the Airedale Transformation and Integration
Group (TIG). Part of the integration work will be to develop better use of the Gold Standard
Framework3 (GSF) by all relevant health and social care practitioners. The GSF is a
systematic approach that looks to optimise the care for patients during their last year of life.
Other tools to support the better co-ordination of the later stages of End of Life (EoL) care
are the Liverpool Care Pathway4 and the Amber Care Bundle5.
As a result of the stakeholder engagement, the aims of the BHH project have been
developed further. The aim is now to improve the patient experience during their end of life
care by implementing a locally applicable version of the National End of Life strategy6. The
six steps of the end of life (EOL) strategy are:
Identify;
Discuss;
Assess;
Support and coordinate;
Care in the last days;
Care after death/bereavement.
The project also aims to:
Reduce the number of bed days patients in the last year of life spend in hospital;
Increase the number of patients who are supported to die in their preferred place of
death.
During 2013, the project will increase the registration of EOL patients in one central place
and thereafter increase the sharing of patient information. This will help health and social
care providers to co-ordinate their support to patients more effectively and also to gather
better data about these patients. Around 1% of the population die each year, but only
3 http://www.goldstandardsframework.org.uk/
4 http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/
5 http://www.ambercarebundle.org/homepage.aspx
6 http://www.endoflifecareforadults.nhs.uk/assets/downloads/pubs_EoLC_Strategy_1.pdf
Section 1 4
around a quarter of those people are currently identified as being in their last year of life.
ANHSFT want to increase this proportion to between half and three-quarters.
ANHSFT will initiate a number of activities from January 2013 until the end of the project in
2015. Part one of the project has been scoped out, but further actions will be planned in for
years two and three.
In the first year of the project, ANHSFT plan to undertake the following objectives:
Workstream 1: Introduce an Electronic Palliative Care Coordination System
(EPaCCS) to record all patients who have been identified as being in their last year
of life. The Telehealth Hub will hold the register and it will be available to
SystmOne users. SystmOne is available to most but not all GP practices. ANHSFT
want to include all eligible residents of the Airedale, Wharfedale and Craven Clinical
Commissioning Group (CCG) area into the register as a minimum, but they would
also like to include eligible residents in the two other CCG’s in the Bradford district;
Workstream 2: Deliver communication skills training to staff who will need to discuss
with patients their inclusion in an EoL register.
Workstream 3: Use the Telehealth Hub as a central coordination centre for all End of
Life services and teams. All registered EoL patients will be eligible to use the
Telehealth Hub (some may chose not to use it), where staff will refer their enquiries
to other services. The hope is that this service will help to avoid any unnecessary
admissions to hospital. A subset of patient on the EOL register will be given access
to telemedicine units in addition to the 24 our support telephone line.
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Section 2: YHEC Evaluation
2.1 YHEC Evaluation Objectives
York Health Economics Consortium (YHEC) has been contracted to provide an evaluation of
the BHH project. The proposed methodology includes an analysis of the costs and the
benefits of the interventions undertaken within the project and the calculation of a return on
investment. If the project team is able to collect data on quality of life changes in the
patients included in the project then that would also enable YHEC to evaluate the cost
effectiveness of the BHH project. Other qualitative information will be analysed to evaluate
the extent to which the project has helped people to die in their stated preferred place.
The key metrics that will need to be collected will include:
Patient data: including information about their medical condition and quality of life;
Patient healthcare resource utilisation data: primary, community and acute health
services use by each patient;
Costs: capital and revenue costs that relate to the BHH project.
A more detailed breakdown of these data requirements can be found in Section 3.
YHEC has agreed to provide the following services:
Develop an evaluation framework (this document) for the project to confirm the data
collection requirements for the evaluation;
Develop, with ANHSFT, a set of data collection forms to define and collect the
required data for evaluation;
Provide half a day every three months during the project to advise and support the
project team with regard to data collection;
Use the data collected to carry out a final evaluation of the project in 2015;
Draft a final evaluation report.
A timeline for the evaluation is listed in Section 4.
2.2 YHEC Evaluation Methodology
This section sets out the proposed evaluation methodology. The evaluation will seek to
quantify the extent to which the BHH project has been successful in:
Reducing the number of hospital bed days (and any other healthcare resources)
used by EoL patients as a result of the project interventions;
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6
Increasing the number of patients who are supported to die in their preferred place of
death.
The reduction in the use of healthcare resources will be evaluated by carrying out a cost
benefits analysis which will allow us to calculate a return on investment for the project. This
will involve identifying and gathering data on the costs of providing the interventions, such as
Telehealth services, the development of EPaCCS and staff training. Data will also be
gathered to enable a calculation to be made of any reduction in healthcare resources used
by groups of patients receiving Telehealth.
2.2.1 Return on Investment
In calculating the return on investment, ANHSFT will need to gather data on the use of
healthcare resources for cohorts of EOL patients before and after the introduction of the
interventions. To do this, ANHSFT will undertake an audit of end of life patients to create a
set of baseline data. This audit will be based on the Bradford Audit7 that was conducted at
Bradford Teaching Hospital Foundation Trust (BTHFT) in 2011.
The audit will gather data on patients who were in EOL care over a three month period from
July to September 2011, ie those patients who died within 12 months (by September 2012).
This will provide data on the use of health resources for patients before the intervention was
introduced. Data on the utilisation of health resources for this cohort of patients will need to
be collected for up to twelve months for these patients, to provide comparative data for those
patients receiving the new interventions. Health resource utilisation data will also be
collected by ANHFT for the last 12 months of life for each patient after the project
commences. This will include data regarding hospital admissions, primary care, community
care and social care if data is available.
At least 50 EoL patients before the interventions and 50 patients after the intervention would
be needed to allow a meaningful assessment of the intervention. If data is available for
more than 50 patients that would be helpful to allow for any data we feel necessary to
exclude, for example, patients who die shortly after their entry to the EoL register.
2.2.2 Cost Effectiveness
The intervention may end up being cost neutral with a reduction in the number of hospital
bed days, but an increase in community care. This does not necessarily mean that the
intervention is not cost effective, as long as a demonstrable benefit can be measured in
terms of improved quality of life in relative terms.
It would be helpful to factor in an assessment of changes in the quality of life (QOL) to help
understand the cost effectiveness of the intervention, but this may not be possible if QOL
data has not been collected for patients prior to the start of the intervention. This is also
problematic because conventional QOL measures may not be appropriate for patients at
EoL. It is therefore suggested that the number of patients who died in their preferred place
7 Price et al. (2001), LYL (Acute Medicine) Baseline audit report.FINAL Oct 2011, BTHFT
Section 2
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of death could act a proxy measure of QOL and this data should therefore also be collected
by the project team.
2.2.3 Qualitative data
ANHSFT intend to develop questionnaires for use with patients, carers and staff and
possibly focus groups with carers and staff. Qualitative data from these sources will be
analysed and collated and provided to YHEC for inclusion in the final evaluation.
Section 3
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Section 3: Data Collection
3.1 Data Collection Needed
Data will need to be collected by ANHSFT during the BHH project. There is around half a
day per quarter allocated throughout the period of the BHH project for YHEC to provide
ANHSFT with advice on data collection and any issues arising that relate to the evaluation.
Data will need to be collected for all patients for their last year of life, including healthcare
resources used throughout their last year of life. As described in Section 2, audit data will be
analysed to provide a control group of patients who were in EOL care prior to the
introduction of the intervention.
ANHSFT will need to collect the data outlined below.
3.1.1 Patient Information:
Age;
Gender;
Home Postcode – for all patients so that a comparable control group can be created
(or other relevant patient identifier);
Nursing home address (if applicable);
Was the place of death recorded.
Preferred place of death;
Actual place of death;
Services to which patients have been signposted;
Quality of Life scores (if appropriate);
Length that patients lived for after entry to EoL register;
Primary disease related to EoL diagnosis:
- If Cancer, what type and stage.
3.1.2 Changes in the consumption of healthcare resources including:
Appointments with GPs, home visits and surgery vists
Outpatients
Hospital inpatient admissions;
Hospital day case admissions;
Ambulance callouts;
Community care services provided: (district nurses, community nursing and out of
hours services)
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3.1.3 Questionnaires and focus groups
Collated and analysed data from patient, carer and staff questionnaires;
Collated and analysed data from carer and staff focus groups.
3.1.4 Cost Information:
To establish the cost of the changes to the End of Life care of patients, costing data will
need to be provided to YHEC for analysis. A breakdown of the likely cost data is listed
below.
One off capital costs:
Set up costs - Introduction of an EPaCCS – input from IT or software development,
cost of purchase;
Additional telemedicine equipment and training in its use;
Develop and delivery of communications training – including all costs of running the
course.
Revenue costs:
Additional Staffing costs – any additional staff deployed to manage EPaCCS and to
cope with increased capacity in the Telehealth Hub;
Telecommunications costs – extra calls made as a result of the intervention;
Any other additional on-going costs related to delivering the service – e.g.
maintenance of the telemedicine equipment.
YHEC will advise ANHSFT on the development of appropriate data collection forms to
gather this data.
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Section 4: Evaluation Timeline
4.1 Evaluation Timeline
The implementation of the Bringing Healthcare Home project is planned for January 2013
and it will run until June 2015.
YHEC will analyse the data collected by ANHSFT from April 2015 and will report the results
including:
A return on investment, based on the reduction in the use of NHS resources matched
against the cost of the intervention;
A measure of the numbers of EOL patients who die in their preferred place of death;
An analysis of any patient, carer and staff experience data.
Between early April 2015 and August 2015, YHEC will analyse and model the set of data
collected by ANHSFT. A report will be compiled, detailing the return on investment, to
support ANHSFT and the Health Foundation in their overall assessment of the project.
Table 2: Timeline for the evaluation of Bringing Healthcare Home
Activity Due date
Draft evaluation framework 20th October 2012
Final agreed evaluation framework Mid December 2012
Baseline Audit January 2013
Interim Audit January 2014
Post intervention Audit January 2015
Submit data set to YHEC April 2015
Draft report August 2015
Final report 20th November 2015
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Appendix 2 Fig 4 Medicines domains of quality
BRINGING HEALTHCARE HOME
DOMAIN 1
EFFECTIVENESS
DOMAIN 2
EFFICIENCY
DOMAIN 3
EQUITY
DOMAIN 4
PATIENT CENTREDNESS
DOMAIN 5
SAFETY
DOMAIN 6
TIMELINESS
OBJECTIVE 1
Reduce time for receipt and
delivery of specialist opinions
OBJECTIVE 2
Reduce unplanned hospital
admissions by 50% and
increase time to care by 20%
through reducing travel time
and duplication
OBJECTIVE 3
Achieve equity of delivery of
specialist opinions to hard to
reach population.
OBJECTIVE 4
To bring care to the patient
and not the patient to carer.
To offer improved patient
choice.
OBJECTIVE 5
Improve mortality, reduce
medication errors, ensure
earlier diagnosis and optimal
investigation pathways, avoid
hospital acquired infections.
OBJECTIVE 6
Provide immediate access on
a 24/7 basis, 365 days per
year to clinical decision
makers.
SUPPORT SERVICES KEY TASKS AS PART OF THE PROJECT
Project Management and
Communication:
Process mapping
Strong governance
Project timelines
Communication strategy
HR/OD:
Job plans
Workforce reduction
Training
Education
Culture change
Finance:
Payment mechanisms
System modelling
Tariff redesign
CQINS
Standard contract
Estates:
Re-profiling works
Re-designing / re-
commissioning services to
improve patient flow
IT Information Services:
Patient/SUS data
IT platform, technical
specification, user acceptance
criteria & network capability.
NHS OUTCOMES FRAMEWORK DELIVERY
DOMAIN 1
Preventing people from dying
prematurely
DOMAIN 2
Enhancing quality of life for
people with long term
conditions
DOMAIN 3
Helping people to recover
from episodes of ill health or
following injury
DOMAIN 4
Ensuring that people have a
positive experience of care
DOMAIN 5
Treating and caring for people
in a safe environment and
protecting them from
avoidable harm
CONTRIBUTING TO INSTITUTE OF MEDICINE DOMAINS OF QUALITY
Drive better access to quality and safety
for patients and core workers
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Appendix 3 Table 1: NICE Standards for EoL care
1. People approaching the end of their life are identified at the right time to receive care
and support to meet their needs and preferences.
2. People approaching the end of life and their families and carers are communicated
with and offered information in a sensitive way, at a time when it is helpful and with respect
for their needs and preferences.
3. People approaching the end of life are offered full assessments to ensure they are
getting the best care and support for their circumstances. During these assessments, they
have the opportunity to discuss their needs (for example, physical, psychological, social,
spiritual and cultural needs) and preferences. This includes the opportunity to develop and
review a care plan detailing their preferences for current and future support and treatment.
4. People approaching the end of life receive treatment and care to manage their
physical and psychological needs, which may be at any time of day and night.
5. People approaching the end of life are offered social, practical and emotional support
tailored to their needs and at the right time to help them feel supported, retain their
independence and do things they enjoy for as long as possible.
6. People approaching the end of life are offered spiritual and/or religious support
appropriate to their needs and preferences.
7. Families and carers of people approaching the end of life have their own needs fully
assessed as appropriate for their changing needs and preferences, and are offered support
to help them cope.
8. People approaching the end of life receive care whenever they need it (day or night)
that is consistent, smoothly coordinated and delivered by staff who are aware of their
medical condition, care plan and preferences.
9. People approaching the end of life who experience a crisis at any time of day or night
receive prompt, safe and effective urgent care that takes into account their needs and
preferences.
10. People approaching the end of life are offered specialist palliative care if their usual
care team is unable to relieve their symptoms adequately. It is offered at the right time for
them and is appropriate to their needs and preferences at any time of day or night.
11. People in the last days of life are identified and receive care according to their care
plan, which takes into account their needs and preferences, and ensures they can have
rapid access to all the support they need, including equipment (such as a pressure-relieving
mattress) and medication.
12. The body of a person who has died is cared for in a culturally sensitive and dignified
manner.
13. Carers and family members of people who have died receive verification and
certification of the death as soon as possible.
14. People closely affected by a death are communicated with in a sensitive way and
offered bereavement, emotional and spiritual support appropriate to their needs and
preferences. This may include information about practical arrangements and local support
services, supportive conversations with staff, and in some cases referral for counselling or
more specialist support.
15. People approaching the end of life and their families and carers are cared for and
supported by staff with the knowledge, skills and attitudes needed to provide high-quality
care.
People approaching the end of life and their families and carers receive high quality care and
support because there is enough staff with the right skills to meet their
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Section 4
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Appendix 3 EOL Pathway Vs Lean Tools
The ANHSFT EOL strategy group using the Lean tools process mapped the current services within the local EOL pathway and compared it to
the NICE quality standards to identify gaps The pathway also recognises the needs of carers, staff and the provision of supporting information
to patients
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