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
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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
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.
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