Sharing and Learning Together to Deliver High Quality End of Life Care for All
Presentations from the Sharing and Learning Together to Deliver High Quality End of Life Care for All event held on
Tuesday 24 June 2014, Congress Centre, London, WC1B 3LS
#nhsiqeolcare
3. Dr. Bee Wee, National Clinical Director
End of Life Care, NHS England
Welcome, Overview and National Update
4. Sharing and learning together to
deliver high quality
End of Life Care for all:
Overview and national update
Dr Bee Wee
NCD for End of Life Care
24th June 2014
5. Pre-April 2013
5
Department of Health
Commissioners, service providers, voluntary sector,
stakeholders, etc.
National
improvement
bodies, e.g.
NEoLCP
Policies
7. Identification
and
assessment
QS1
Identification
QS2
Communication
and information
QS3
Assessment,
care planning
and review
Holistic support
QS4 Physical
and
psychological
QS5 Social,
practical and
emotional
QS6 Spiritual
and religious
QS7 Families
and carers
Access to
services
QS8
Coordinated
care
QS9 Urgent
care
QS10 Specialist
palliative care
Care in the last
days of life
QS11 Care in
the last days of
life
Care after
death
QS12 Care of
the body
QS13
Verification and
certification
QS14
Bereavement
support
Workforce
QS15 Training
QS16 Planning
NICE Quality Standard: End of Life Care for Adults
8. Since April 2013: national
NHS
England
Public
Health
England
(PHE)
Improving
outcomes
Health
Educ.
England
(HEE)
8
NHSIQ
Department of Health
Mandates and
Outcomes Frameworks
9. Since April 2013: local
9
CCGs
Local
authorities
Health
and
wellbeing
boards
Commissioning Support Units
Local Area Teams (27)
Clinical Senates
Strategic Clinical Networks
Healthwatch
PHE
LETBs
11. Looking back: much achieved but….
• Dying Matters
• Electronic palliative care coordinating systems
• Transforming acute care in hospitals
• National End of Life Care Intelligence Network
• Core competencies identified
• e-ELCA launched
• National survey of bereaved people
11
12. Much more to do:
• Variations across the country
• ‘Sharp elbow’ effect
• Inequitable access for some groups of people
• Inconsistent care ‘out of hours’
• Unreliable communication and coordination
12
13. 2013 - a momentous year
• Radical change to the NHS landscape
• new structures
• new organisations
• new people
• new ways of doing things
• focus shift to outcomes
• Growing financial challenge
• Fundamentally challenging reports: Francis, Berwick
• More Care Less Pathway (Neuberger)
• Blows to public confidence and professional morale
13
15. What the people we serve want
wants….
Person centred
coordinated care
“My care is planned with people who
work together to understand me and
my carer(s), put me in control, co-
ordinate and deliver services to
achieve my best outcomes”
Communication
Information
Decision-makingCare planningTransitions
My
goals/outcomes
Emergencies
16. What’s on the immediate agenda
• Refreshing the Strategy
• Making progress on legacy work
• Focusing on strategic leadership for commissioning
• Working together to improve high quality end of life care
for all
16
18. Organisational and
Clinical Processes
Person
centred-
coordinated
care
Health and Care
Professionals
committed to
partnership working
Informed and
engaged patients
and carers
Commissioning
The House of Care describes four key interdependent components that, if implemented together, will
achieve patient centred, coordinated service for people living with long term conditions and their carers.
House of Care
19. Pre-April 2013
19
Department of Health
Commissioners, service providers, voluntary sector,
stakeholders, etc.
National
improvement
bodies, e.g.
NEoLCP
Policies
22. Anita Hayes, Programme Delivery Lead
End of Life Care, Mental Health & Dementia,
NHS Improving Quality
NHS Improving Quality priorities for End of Life Care
25. The
Individual
and Their
Carers
Discussions as
the End of Life
Approaches
Assessment,
Care Planning
and Review
Co-ordination
of Care
Delivery of
High Quality
Services in
Difference
Settings
Care in the Last
Days of Life
Care After
Death
Delivering person-centred care
Social Care
Spiritual Care
Services
Support for
Carers &
Families
EPaCCS
Transform
Programme
Facilitators and
Champions
Networks
26. Improvement capability
and capacity building
NHS IQ are helping to:
• Embed improvement and change expertise through science,
knowledge and skills
• Develop the science, knowledge and skills infrastructure
available across the NHS
• Support the implementation of the Berwick recommendations
• Build leadership capability in transformational change and
improvement across the commissioning system and primary
care.
27. Living longer lives
• Delivering elements of the CVD
Outcomes Strategy
• Engaging with clinicians and primary
care on the five big killers
• Supporting the NHS Health Check
programme
• Improving public awareness of
symptoms and early diagnosis of
disease.
Reducing the number of people who die too soon
from illnesses through:
28. Person Centred Care and Support
• Supporting the integrated care pioneers
• Transforming end of life care in acute hospitals inc. EPaCCS roll out
• Developing LTC improvement resources and Year of Care funding
models
• Improving care for people with dementia, mental health needs and
learning disabilities.
29. Seven Day Services
Supporting the adoption into practice of evidence
based seven day services at pace and scale across
England:
• Supporting and developing new models of delivery
• Working with early adopter sites to support learning and enable
whole system change
• Engaging with users in the designing and influencing the right
solutions to meet local health needs.
30. Experience of care
Engineering social change through:
• Patient-led improvement to empower and support individuals and
communities to get involved
• Patient-centred best practice to stimulate, learn,
share and spread experience best practice
• System improvement to help commissioners and providers to use
patient experience as a key driver for service
improvement
• Project services to enable patient experience
to inform and influence national policy design,
priorities
31. Leading transformational change
in care delivery system
• NHS IQ practical programme to
provide commissioners tools and
support for large scale challenges
• Designed for CCG – free of charge
• Learning through practical examples
and application of new ideas
• Help CCG’s demonstrate competence
as part of the CCG assurance process
32.
33. NHS England Business Plan:
Long term conditions, older people and end of life care
• improve the care and support for people at the end of
their lives by ensuring the commissioning of consistent
high quality care across the system; implementing the
agreed response to the independent review of the
Liverpool Care Pathway
• supporting the national roll out of electronic palliative
care co-ordination systems and ongoing development of
the new palliative care funding system
34. Supporting people to live and die well
Delivering Implementation Support:
Engaging communities
Person-centred care and support
Acute Hospitals
Care of the dying
Supporting networks
Supporting commissioning
End of Life Care Programme
35. End of life Care Programme
Key elements: case for change
Raising awareness
Integrated
service delivery
Workforce, measurement,
research, commissioning
Societal
level
Individual
level
Infrastructure
Theory of change - design - methodology- test- reframe -deliver- sustain
36.
37. End of Life Care Facilitators and Champions Network
40. Liz Maddocks-Brown, Capability & Faculty Development Manager,
NHS Improving Quality and
Georgina Earle, Programme Coordinator
Building Capability and Maturity in Networks
41. The Power and Potential of Networks
Building capability and maturity –what makes a good network?
Liz Maddocks-Brown
Senior Network and Faculty Manager
Sharing and learning together to deliver high quality End of Life
Care for all
Tuesday, 24 June 2014
42. 42
Facilitators and Champions Network
Your Great Achievements 2010-2014
Enthusiastic, Skilled, Motivated Workforce
Working collaboratively across boundaries
Over 600 network members
Patients, individuals and their carers
have benefited tremendously
Highly valued and doing what you set our to do …prompting
sharing, expertise , experience, best practice and peer to peer support !
43. 43
Your feedback from the evaluation
“Feeling a part of
something bigger that will
really make a difference to
patient care”
“Having the network allows
you a safe place to find out
what you don’t know!"
“Feel more confident in my
approach as based on evidence
from other areas”
“Without the end of life care
programme , my life would be lot
more difficult , I use the resources
endlessly”
“I`m not alone, motivating e
myself when on my own..I'm not
going mad !”
“End of life care is all about support ,
we need to show we can support each
other , that’s what we do, what its
about”
“Encouraged me to think about the
wider picture and become to
parochial”
44. 44
The NHS Improvement Challenge
is tough
The long steep “improvement hill“
A gradient of 5-6% recurrent saving for the next 5-10 years
(8.5 Billion public sector cuts )
Drive to maintain and improve quality
Rising demand, rising expectations
Leaders are looking for ideas on how to upgrade their improvement
engines to make it up that hill - Networks are
the essential source of energy !
45. 45
Networks- reaching the parts that
organisational structures can`t !
Health and care is a highly social business that depends
on the behaviours, skills and relationships of the people
that deliver and receive it .
Trust , discipline ,energy, commitment , collaboration, equality,
judgement .
46. 46
Why Networks? Power and potential
Uniquely positioned; the equal platform to leverage the power of social and
professional connections ,free people , create new perspectives
“Networks are a powerful way of sharing learning and ideas, building a sense
of community and purpose, shaping new solutions to “wicked” problems,
tapping into hidden talent, energy and knowledge, and providing space to
innovate and embed change.”
(Learning report: Leading networks in healthcare- Learning about what works –the theory and the practice
2013 the Health Foundation)
48. 48
Network Types
Managed (top-down)
Hybrid clinical (explicit clinical outcome focus)
Developmental (peer-to-peer formal)
Agency (pooling of resources)
Learning (communities of practice)
Learning(enclave/support)
Advocacy(champion and role model)
Social Movement(peer-to-peer)
MoreStructuredLessStructured
49. 49
The 5C Wheel
Learning report: Leading networks in healthcare-
Learning about what works –the theory and the practice 2013 the Health Foundation)
Ensuring networks are designed and run at their best
Interdependent, interact to power up network success
51. 51
Common Purpose
A network’s common purpose should unite members from
all professions, roles and organisations. It should create
widespread engagement, commitment to quality
improvement.
It should mobilise hearts, minds, hands!
52. 52
Co-operative Structure
A network establishes a co-operative
structure that allows individuals to
collaborate safely in a non-
hierarchical manner, while being
structured and influential enough to
get things done.
Step 1 – Put in place the right leadership model
Step 2 – Consider and identify where the
resources will come from
Step 3 – Identify key people to be involved
Step 4 – Encourage co-creation
Step 5 - Coach Members
53. 53
Building Critical Mass
Promoting and accelerating
different ways of doing things and
getting things done. Combine
voices, resources and influence!
Step 1 – Create a clear and compelling value proposition
Step 2 – Define an effective engagement strategy
Step 3 – Leverage the founding mandate or external
sponsorship
Step 4 – Proactively search for members
Step 5 – Cultivate change
agents
54. End of Life Care Facilitators and
Champions Network
Key:
Blue: EoLC Facilitator
Red: Social Care Champion
Yellow: EoLC Lead
Green: APCSW
White: EoLC role unknown
600 + membership
55. 55
Collective Intelligence
Networks are able to gather
collective intelligence by bringing
together data, information and
ideas from members.
Step 1 – Provide infrastructure for people to share data and
experience
Step 2 – Promote transparency
Step 3 – Facilitate discussion, experimentation and
innovation
Step 4 – Define and quantify network
impact
56. 56
Building a Community
Networks are able to build a
community that fosters co-
operation and trust among
members, encourages ongoing
participation and commitment.
Step 1 – Facilitate personal contact where possible, including social
interaction
Step 2 – Create opportunities focused interaction on specific
topics
Step 3 – Create opportunities for focused interaction by
smaller peer subgroups
58. 58
Building capability and maturity in
networks - Key messages
Networks are growing in number and importance in health
and care -”the Improvement Hill “
A social system ; cross boundary trusting and
collaborative relationships are essential
Effective networks have 5 key features 5`Cs wheel a
vital tool for success
Innovative ways of connecting must be embedded-
social media is important
What matters to you and your network is important :
getting the measure
Continuing to develop and improve care for those
approaching end of life
You are doing great work; keep the energy and momentum !
61. Professor Margaret Holloway,
Professor of Social Work, Director of Centre for End of Life
Studies, Hull University
Roles of Social Care Champions and End of Life Care Facilitators
62. What’s in a name? Champions,
Facilitators and the national End of
Life Care Network
Margaret Holloway,
Professor of Social Work
and Director of the Centre
for End of Life Studies
University of Hull
63. End of Life Care Champions,
Facilitators and Leads?
What is an EOLC champion?
What is an EOLC facilitator?
What is an EOLC lead?
64. Roles - what do they do?
What is the role of an EOLC champion?
What is the role of an EOLC facilitator?
What is the role of an EOLC lead ?
65. Skills - how do they do it?
What skills does an EOLC champion employ?
What skills does an EOLC facilitator employ?
What skills does an EOLC lead employ?
66. 3 LEVELS
Level 1
Raise awareness of EOLC at every opportunity
(Champions, Facilitators, Leads)
Level 2
Facilitate the delivery of quality EOLC through own activities and
supporting others
(Facilitators, Leads)
Level 3
Address EOLC at strategic commissioning and service development level
(Leads)
67. What is the difference between an EOLC
champion in healthcare or their colleague in
social care?
WORK CONTEXT
68. End of Life Care Facilitators and Champions network
Connects and maps people with a passion and ambition for
enhancing End of Life Care.
69. Facilitators and Champions Network
Purpose
1. To connect like-minded professionals at
local level
2. To stimulate eolc developments at local,
regional and national level
3. To share best practice nationally
70. In summary…
Everyone’s a champion
Some people have designated roles
facilitating and/or leading others
How you do this depends on your work
context and core roles, tasks and
responsibilities
71. How can the network best support you?
www.hull.ac.uk/cels/champions
c.gregory@hull.ac.uk; m.l.holloway@hull.ac.uk
72. Workshops
12:00 – 12:30pm: Five Workshop Sessions running parallel.
W1. End of Life Care Champions Programme (Nottinghamshire) – a multi-disciplinary approach
across the community. Halima Wilson and Elise Adam. (Room 1)
W2. Skills for Care a) London / South East: Developing local champions across health and
social care b) St Luke’s Hospice: Developing the 6 steps mapping tool, qualifications and
educational resources for social care professionals. Linda MacEachen and Glenda
Cooper. (Room 2)
W3. Workforce development in EoLC for staff in social care and regional workshops for the
Association of Palliative Care Social Workers. Lesley Adshead. (Room 3)
W4. EoLC Discharge coordination pathway and check list to ensure safe transition from
secondary to primary care. Carolyn Doyle and Alison Drew. (Room 4)
W5. The Circle of Life (interactive session board game): an EoLC training resource to meet
learning outcomes on communication, best interests, mental capacity and advance care
planning. Gina King. (Plenary Room, Congress Hall)
74. Facilitators & Champions Network
Health Check
• So far 29 responses
• 12 out of 29 scored 20 or above (41%)
• 12 out of 20 scored between 20 and 10 (41%)
• 5 out of 29 scored 5 or below or incomplete
(18%)
• 82% are strongly agree or agree / neutral that
you have a healthy network to build on
75. Dr. Bee Wee, National Clinical Director
and Anita Hayes, Programme Delivery Lead
Priorities for the care of the dying person
Update, quality assurance and measurement
77. “Health and social care providers, and their staff
will be expected to review the care they provide
for dying people in regard to each of the five
priority areas. This includes consideration of how
they will demonstrate attention to these priorities
for individuals and those that are important to
them”
78. Discussion
How are you approaching this in your
organisation?
- Share ideas
- Discuss challenges
81. Quality assurance and quality
improvement
Considerations
- Aims
- Measurement
- Building into what
exists already in your
organisations
82. What is your aim?
What is your objective?
Spend 2 minutes,
reflect and write this
down.
Witham reflections #2 by Lincolnianhttp://photography.tutsplus.com/articles/100-creative-examples-of-reflections-in-photography--photo-
6722
83. Is it about quality assurance or
measurement for improvement?
85. Do you have a balance of measures?
Structure
Process measures
Outcome measures
Balancing measures
Balancing measures are measures of unintended
consequences
Qualitative and quantitative
86. What are your priorities
“Quite often intuitive information synthesises with
information from formal and informal sources. Whilst
independently, the information is disparate and vague … when
you put it together, you start to see a picture emerging which
indicates that something is not right.”
Director of Quality and Safety. From The Measurement and Monitoring of Safety,
page 52, [6].
92. Displaying this ….
Many audit questions, n=99 one month
Multi-disciplinary recognition that
the patient is dying.
2 audit questions, n=15 per month
93. Summary
• Build on what you know already
• Build measurement and formal / informal
feedback into your approach as facilitators and
champions
• Have a balance of measures
• Think practical, be robust, be curious
• Have ‘good enough’ measurement
94. Review
Use the worksheet as a
prompt for discussion and
review.
You can work as a table, in
pairs or on your own.
You have 20 minutes.
97. Workshops
2:30pm – 3pm: Five Workshop Sessions running parallel.
W6. Supervision in End of Life Care: availability, time/space, compassion fatigue and
resilience. Marie Price. (Plenary Room, Congress Hall)
W7. a) Situated learning for care homes and domiciliary agencies, b) EoLC ABC education
programme and ‘train the trainers’ for care homes, domiciliary agencies, ambulance
services and homeless people workers. Jenny Caine, Janet Willoughby and Sally
Bacon. (Room 1)
W8. Pennine Acute Trust EoLC Transform Programme champions training course. Christine
Taylor and Sarah Mullen. (Room 2)
W9. Mobilising informal carer support networks. Amanda Gough and Ditch Townsend.
(Room 3)
W10. Delivering the six steps to success programme: challenges and strategies. Denise
Williams. (Room 4)
100. Why data ?
100 Intro
Measure
Categorise
Manage
Plan
Explore
Understand
Control
Evaluate
Report
Monitor
101. There is so much data out there
‘Government’ collected
• Census
• Births
• Deaths
• Tax
• Social security
• Office of National
Statistics
101 Intro
‘Health’ data
• GP patient records
• Hospital patient records
• Hospital admissions
statistics
• Audits
• Disease registers
• Drug trials
102. Some examples
• Encouraging good practice
• Understanding and exploring the context
• Asking questions
102 Intro
103. Impact of Electronic Palliative
Care Coordination systems
(EPaCCs) on place of death
Andy Pring, Senior Analyst, Knowledge and Intelligence Team, South West
Julian Abel, Palliative Care Consultant Weston super Mare
104. 104 Impact of EPACCs
Source : The impact of advance care planning of place of death, a hospice retrospective cohort study
Abel J1, Pring A, Rich A, Malik T, Verne J. BMJ Support Palliat Care. 2013 Jun;3(2):168-73. doi:
10.1136/bmjspcare-2012-000327. Epub 2013 Mar 15
Where people with terminal illnesses
choose to die
106. Cancer deaths (N=2,022)
106 Impact of EPaCCS
All cancer deaths
N.E.W Devon CCG and S Devon
&Torbay CCG 2010-12 (N=10,463)
EPaCCS
107. Non-cancer deaths (N=985)
107 Impact of EPaCCS
All non-cancer deaths
N.E.W Devon CCG and S Devon
&Torbay CCG 2010-12 (N=26,294)
EPaCCS
108. Conclusion
• The process of asking people about their end of life
preferences, placing these on an EPaCCS and providing
care where patients choose is part of a highly effective
intervention in allowing people to die in their place of
choice.
108 Impact of EPaCCS
110. Death in usual place of residence
110 Place of death
0
5
10
15
20
25
30
35
40
45
50
2001 2003 2005 2007 2009 2011
111. Changing practice or changing patients ?
111 Place of death
Management
Technology
Environment
112. The number of deaths
England
112 Place of death
0
50,000
100,000
150,000
200,000
250,000
300,000
350,000
400,000
450,000
500,000
2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
113. Age at death – all causes
England
113 Place of death
0
2
4
6
8
10
12
14
16
18
20
0-24 25 30 35 40 45 50 55 60 65 70 75 80 85 90 95+
Percentageofdeaths
Age at death
2001-03 2010-12
114. Place of death by age
All causes of death except external causes, England 2010-12
114 Place of death
0
10
20
30
40
50
60
70
0-49 50-64 65 70 75 80 85 90+
Percentageofdeaths
Hospital Home Care home Hospice DiUPR
115. The trends in cause of death
England
115 Place of death
0
20,000
40,000
60,000
80,000
100,000
120,000
140,000
2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
Cancer Cerebro vascular disease
Ischaemic heart disease Dementia
Respiratory disease External causes
Other
116. Death in usual place of residence
by cause of death – over time
England
116 Place of death
0
10
20
30
40
50
60
70
80
2001-03 2010-12
117. Same measure different distribution
2010-12 excluding external causes
117 Place of death
0
10
20
30
40
50
60
Non-cancer Cancer
Percentageofdeaths
Hospital Home Care home Hospice DiUPR
118. Place of death by age
Non-cancer Cancer
England 2010-12
118 Place of death
0
10
20
30
40
50
60
70
Percentageofdeaths
Hospital Home Care home
Hospice DiUPR
0
10
20
30
40
50
60
70
Percentageofdeaths
Hospital Home Care home
Hospice DiUPR
119. Place of death for residents (Y) and
non-residents (N) of a care-home
2010-12, England
119 Place of death
0
10
20
30
40
50
60
70
Hospital Home Carehome Hospice
Yes
NoY
N
120. Variations by where you live
EndofLifeProfiles-Percentageofcancerdeathsinhospital
120 Place of death
121. Significant factors affecting DiUPR
121 Place of death
All these changing patterns interact.
• Seen individually some may raise the DiUPR figure
• Others my reduce it
Can we get a sense of what how DiUPR would have changed if patterns of age
at death, cause of death, and residence in a care home had remained the
same ?
122. Significant factors affecting DiUPR
DeathinUsualPlaceofResidenceStandardised for
age,sex,causeofdeath,carehomeresidence
WARNING
Back of
envelope
122 Place of death
0%
10%
20%
30%
40%
50%
2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
Crude Adjusted
Change 2008-2012:
Crude : 6%, Adjusted 4%
i.e. Even allowing for the changes in the patients
you see – the outcome in terms of DiUPR has
changed in recent years
124. 124 Hospitals
What’s the data for hospitals
We might assume that trends in
• admissions in last year of life,
• emergency re-admissions in last 100 days
• total stay in hospital in last 100 days
Would crudely follow the number of deaths, or the number of deaths in hospital
125. But they don’t appear to
Average for acute hospital trusts, England (except total & hospital deaths from ONS)
Source : Health and Social Care Information Centre / Public Health England
125 Hospitals
130. Commitment to Carers – why? The facts
5.4 million
people in
England provide
unpaid care for a
friend or family
member
1.4 million people
providing fifty or more
hours of unpaid care
600,000 increase in
the number of carers
between 2001 and
2011- largest growth
in unpaid carer
category, fifty or
more hours per
week
Carers contribution to society estimated at £119 billion a year
Unpaid care
increasing at
faster rate than
population
growth
21% of carers providing
over 50 hours per week
in poor health compared
to 11% of non carer
population
Health
professionals
identify one
in ten
carers, GPs
only identify
7%
131. Commitment to Carers
A Carer is anybody who looks after a
family member, partner or friend who
needs help because of their illness,
frailty or disability. All the care they
give is unpaid
134. Commitment to Carers
• NHSIQ Commissioned by NHS England summer
2013
• Extensive participation exercise with carers
organisations, carers and other key stake
holders
• Social media, blogs, survey
• Tweet #NHSThinkCarer
• December workshop
• Identified priorities for carers
135. NHS Improving Quality and NHS England
Treat me and my husband as a
unit, don't shut me out. All
that happens to one of us,
impacts on the other and I
guess this will be increasingly
so as the disease progresses
and life gets more difficult for
both of us.
I was not asked if I was
prepared to be the carer,
whether I needed help,
how I felt about it, nor
given any information to
help me.
To feel like someone
cares, at the moment I
feel totally isolated
dealing with something
that has turned my life
upside down
……Do not assume that
because I am here, I am
able to do everything that
needs doing, either
physically or mentally.
I had not initially realised I was
a "Carer", until the nurse at our
GP's practice happened to use
the word while giving a flu jab.
But I didn't know what it
meant, or what to do about it
and it took me years to find out
as much as I know now (and I
still don't think I know much!)
………when you first start
caring, especially if the
person you are caring for is
very unwell it is so
overwhelming to find
yourself in the situation
that your focus is totally on
the person you are caring
for.
The Impact of Being a Carer
136. NHS Improving Quality and NHS England
Understand, that most carers will not
ask for help until they are well past
needing it….. we may seem like it is all
okay and appear to be carrying on as
normal, but what are we supposed to
look like, do we all need to be stood at
the edge of a cliff screaming?
Invite me to meeting with carers who
have a positive experience to share. I
need HOPE
…don't wait for everything to go pear
shaped when it is a clearly progressive
trajectory but the package only caters
for here and now and it then takes
another six plus weeks to provide for
the changes that were clearly
predictable
Understand how many unlinked
professionals that the family has to
deal with
They often forget, except my GP he's
always looking out for me. Even my
employers, the NHS! Forget
sometimes!
Talk to us, realise that there are lots of
different groups of carers, with many
areas that overlap, but many that do
not. Be flexible in your support, make
it person centred we cannot all fit
inside the boxes on your forms, we do
not all meet the criteria specified. We
are people first!
Treat each caring situation individually
COMPASSION
…by offering positive practical help
and not being judgemental
137. NHS Improving Quality and NHS England
Speak to me,
listen and act on
what I say
Take the time to actually listen to our problems.
Then to help us find solutions. Do not ignore us and
surround us with red tape and paperwork
Recognise and involve carers right at the start of any
conversation about the patients treatment or care,
listen to what they have to say and value their
expertise by not ignoring them or cutting them out of
decision making
To be able to have a voice in the care and support when
caring for someone and in particular older persons
To actually listen and not judge and to be
understanding and to put the family at the
heart of the issues. They also need to work
together better and listen and talk to each
other in a key working way so we are not
repeating everything to everyone we see
…not using the excuse of confidentiality to avoid LISTENING to carers - it might be
appropriate not to tell me stuff but it is NOT appropriate to ignore my views and input
Listen to what I say - I know
MY husband. I look after him
24/7 - you don't!
138. NHS Improving Quality and NHS England
What’s Good?
Where health professional have shared their
expertise this has helped.
I attended the Memory Group with my husband and
was given great support, practical help and loads of
information useful for now and later, including about
support for myself.
…allowed me to book urgent Doctor
appointments for myself.
Offered and had Carers Health check.
Husband's GP offered me the opportunity to
see her and speak to her, which was great as
she was fully aware of the situation at home
and was very understanding and empathetic
and is now treating me...The one-to-one carers needs assessment was great,
but I had to wait a really long time for it
The Physiotherapists who assisted my mum showed
me the correct way to get her in and out of bed …..
and also what exercises to do to help her both
physically and with her speech.
GPs have after a lot of work on my part realised
that we need home visits when we ask, slot me
in if I have a problem, are very sympathetic.
Our GP practice has been great. Nothing is
too much trouble. If we're clear about how
they can help, they do.
Personal Care Co-ordinators are an invaluable 'go-to first' for a carer, when problems arise.
Having one or two people who you know and who know your circumstances without having to
repeat them every time is both stress less and reassuring.
139. NHS Improving Quality and NHS England
What would be good
Firstly by treating us as an
equal partner in care
By being more flexible with appointments,
especially when Carers work as well as care for
a loved one
Ensure that all records flag up when
person has caring responsibilities.
Meetings to discuss should not just be 9-5
offer help to take out the disabled person
giving the carer a break in
their own home
Make it seamless across hospitals, GP
Surgery, dentist, podiatry etc.so that carers
info is held on the records of the person being
cared for.to make it easier for the carer to
arrange appointment. …..and ask other
questions
All carers should be encouraged to have a free
health check every year. Prescription
medicines for carers should be free
Ensure that which I need in terms of
equipment, physical and emotional support is
offered sooner and without having repetitive
and delaying assessments that add to the
stress of the situation you are faced with
Remembering my name is a really good start
Health services records should show that
carers/family members are involved in caring
for someone so they are fully involved in all
aspects of medical, mental. Physical care and
attend appointments/ meetings etc.
Have a one stop shop for information, when I
first started caring for my dad I went round in
circles finding the correct information
140. Commitment to Carers
• Publication in May 2014 of NHS England’s
‘Commitment to Carers’
– Launched by Simon Stephens & personally involved
– Higher profile
141.
142. Emerging themes
• Recognise me as a carer(this may not always be as ‘carers’ but simply
as parents. children, partners, friends and members of our local
communities.
• Information is shared with me and other professionals.
• Signpost information for me and help link professionals togethe.r
• Care is flexible and is available when it suits me and the person I care
for.
• Recognise that I also may need help both in my caring role and in
maintaining my own health and well being.
• Respect, involve and treat me as an expert in care.
• Treat me with dignity and compassion.
147. Commitment to Carers – Evidence summits
Commitment 27
• Carers Evidence Summits
– North – 1 July York
– Midlands and East - 3 July Leicester
– London – 8 July London
– South – 10 July Taunton
• In partnership with NHS England, RCGP and in collaboration with
Carers organisations (commitments 13 & 24)
• Involving regional leads as much as possible
• Social media activity up to and including the events
• 80 delegates (100 London)
– Carers organisations and Carers, CCGs - Commissioners, Primary Care - GPs,
Health & Wellbeing Boards, providers……
148. Commitment to Carers – Evidence summits
Moving on
• The outputs will:
– Identify what works well to support the health and wellbeing of carers
– Help us understand what needs to happen so that good practice is spread
– Promote how our health services can improve the life for carers
– Improve outcomes through commissioning
• Case studies to create ‘principles of practice’ for the commissioning
of services to inform the autumn commissioning round
• Case studies received from a variety of sources
– Over 60 to date plus – Carers organisations, Acute care, CCGs, LAs, strong
examples of joint commissioning
– 2 specifically on End of Life Care and Bereavement
– 60 examples from 11 GP practices and 4 CCGs
149. Commitment to Carers – Young Carers Event
• Event October 2014 (half term)
– To ensure that young carers have a say and are heard
– Simon Stevens attending
– ‘different venue’
– Young carers leading the agenda
• Young Carers Festival
– 1500 young carers – Hampshire
– YMCA & Childrens Society
– Health Professionals Question Time
153. Nottinghamshire End of Life Care
Champions Programme –
a multi-disciplinary approach
across the community
Halima Wilson
Workforce and Organisational Development Officer,
Optimum/Nottinghamshire County Council
Elise Adam
End of Life Care Trainer,
County Health Partnerships
155. Nottinghamshire EOL Champions
• Why have Champions?
• Recruitment of Champions
• Who are the Champions?
• Success of the Champions programme
To provide end of life care (EOL) knowledge, information and training to the health and
social care sector in Nottinghamshire
156. Why have EOL Champions?
• Using resources wisely
• Spread the message further
• Share the workload
• Harness the passion of people
• Motivate each other
• Recognise people’s good work in their own
workplace and the wider community
• Feel part of a group that shares their enthusiasm
157. Recruitment of Champions
• Looked at the national, regional and local EOL picture around EOLC
• Developed an action plan
• Launched the EOL Champions programme via websites,
newsletters, emails, events, training courses and on visits to
different organisations
• Recruited EOL Champions across different organisations over the
last 2 years
158. Who are the Champions?
• Maggie Rhodes – Manager, Landermeads Care Home
• Karen Tidy –Manager, Landermeads Care Home
• Mercy Cofie Cudjoe – Manager and staff at Alexandra Lodge Care Home
• Julie Barker – GP Newark and Sherwood CCG
• Zoe Taylor – Senior carer, Alexandra House Care Home
• Emma Townsend – Mental Health Nurse, Nottinghamshire Dementia Outreach
• Elaine Maddock – GP Nottingham North and East CCG
• Michael Osbourne – Volunteer Service User Consultant
• Natalie Bryan – Community Care Officer, NCC
• Kath Binns – Social Worker, NCC
• Jane Zdanowska – Commissioning Officer, NCC
• Cathy Burgum - Quality Assurance Manager – HC-One
• Hayley Spencer – Manager, Broadlands Care Home
• Lisa Rooks – Manager, Mencap
• Joanne Polkey – Manager, Nottinghamshire Hospice at Home
• Janis Sim - Manager, Nottinghamshire Hospice
159. Who are the Champions?
• Wendy Berridge – LTC Nurse, Primary Integrated Community Services
• Gemma Del Toro - LD Health trainer, Nottinghamshire Healthcare Trust
• Steph Pindor – EOLC trainer, County Health Partnerships
• Elise Adam – EOLC trainer, County Health Partnerships
• Halima Wilson- WoD Officer, NCC
• Mark Griffin – Community Psychiatric Nurse, County Health Partnerships
• Linda Fern – Community Matron, County Health Partnerships
• Elaine Watts – Specialist Palliative Care Nurse, Primary Integrated Community
Services Ltd
• Claire Henley – LD Nurse Specialist, Sherwood Forest Hospitals Foundation Trust
• Sue Davies - Calverton Supreme Home Care Ltd
• Cherry Rumsey –Palliative Link Nurse, Nottingham Healthcare Trust
• Annabel Wilson – Community Staff Nurse, Nottingham Healthcare Trust
• Kath Oakley – Patient Participation Group – Keyworth
• Heather De’Ath – Trainer, Seely Hirst House
• Angela Hopewell – Seely Hirst House
• Julie Ward-Daft – Manager, Seely Hirst House
• Janet Parry – Seely Hirst House
160. Success of Champions
How can we measure the success of the Champions programme?
• Chosen as 1 of 3 national GSF Cross Boundary Care Pilot projects
• EOL Champions who attained GSF accreditation now help other
care homes who are going through the same process
• Involved in Dying Matters Awareness events
• Organised and presented at local and national conferences
• Submitted articles for the EOL Newsletter/websites
• Two of the EOL Champions Gemma and Claire have been
recognised nationally for their work around end of life care for
people with learning disabilities
161. A multi-disciplinary approach
across the community
• Network widely
• Work with key people
• Share good practice across the community
• Demonstrate how this works in practice e.g. at Dying Matters
events 2014
• Better understanding of how each other’s roles work
• Has improved communication between services
• Listened to other people and use their ideas
164. Background to the
HENCEL funded Project
• Health Education North Central and East London (HENCEL) through an
EoLC Advisory Group awarded funding to 7 EoLC projects in its area
• Skills for Care partnered with Skills for Health and worked in association
with the NCPC to run a project which started in October 2013
• This project focused specifically on integration at End of Life Care
• The project was delivered across 10 of the 13 local authority areas
covered by HENCEL: Barking and Dagenham, Camden, City of London,
Hackney, Havering, Islington, Newham, Redbridge, Tower Hamlets,
Waltham Forest
• The project built on other work Skills for Care and Skills for Health had
developed on workforce integration
• Completion of the project resources and networks is continuing with
some additional activities agreed to be completed by March 2015
165. Project aims
• The aim of this project was to improve people’s experiences of
end of life care by encouraging people to work together in an
integrated way. Its purpose was to provide guidance to
individuals in daily practice in both health and social care
settings, by finding out what mattered most to people and
translating this into:
• A set of underpinning key messages
• A short one and half hour learning and development
session delivering the key messages to front line workers
• A film, illustrating the key messages
• Additionally, to create a network of champions who would be
able to continue to support each other once the project was
over and to offer them accredited training opportunities
166. Project
methodology
• Emphasis on working together in an integrated way – context
end of life care
• At every stage of the work people in different roles across
health and social care were brought together to enable learning
from each other and begin to create new relationships that
supported integrated practice
• The starting point was listening to people’s experiences -
sessions were designed to encourage free-flowing
conversations that led people into thinking about what works
and doesn’t. These stories and experiences created learning
points and shaped the materials produced
• A co-production approach was used throughout
167. Those involved
in the project
• Project steering group
• Expert Reference Group (ERG) – essential for ensuring links with
other local strategies and avoid duplication.
• Champions - people in a range of roles with an enthusiasm for
improving the quality and experience of end of life care.
• Front line practitioners who attended learning and
development sessions
Every event included people from health and social care, people
from the statutory and voluntary sector and carers and people
who used services (experts by experience) - including carers,
commissioners (health and social care); district and hospital based nurses; Social
workers; hospice staff; patient representatives; HR/trainers (health and social care)
doctors (GPs and consultants); health care assistants; social care workers; managers
(team leaders, home managers, voluntary organisation managers)
168. Numbers
involved
Members on the ERG 13
Champions sessions run 4
Champions attended the
sessions
46
Learning and Development
sessions run
18
Number of front line workers
reached
296
169. Project stages
One • Identifying and working with the key players across the HENCEL area.
• Building the project plan around the already established networks, resources
and priorities.
• Identifying champions and other resources.
Two • Working with the champions, identifying key messages through
personal stories and experience, and beginning to connect champions
to each other.
• Using the messages to develop the learning materials.
• Identifying participants and venues for the learning and development
sessions.
Three • Delivering the learning and development sessions.
• Making the film.
• Setting up a framework for an ongoing champion network.
Four • Launching the products and sharing them
• Dissemination of learning and sustaining work started and the network
170. Project resources
produced
• Six Key Messages for people working at the front line, to help
them in their everyday practice developed into e-learning tool.
• Session plan for using the resources to run a learning and
development session for front line workers.
• A film illustrating the key messages through the story of Pippa
who has Motor Neurone Disease and her family
• A second talking heads film about the different roles of
everyone possibly involved during end of life care with an
accompanying booklet
• Accredited facilitation training opportunities for champions
• Places on accredited End of Life Care qualifications
• Creation of a network of champions with 3 face to face sessions
and an ongoing virtual network
171. Project next steps
• Completion of the resources and films
• Films showcased at National Council for Palliative Care
conference on 11th Sept.
• Launch of all resources and the champions network 16th
October
• Champions and front line workers accredited training
opportunities offered
• Project delivered to missing HENCEL boroughs (Barnet, Enfield
and Haringey)
• Project learning and resources disseminated across London
with cross referencing to the other HENCEL funded projects
• Network of champions expanded and sustained
172. Skills for Care’s
resources for EoLC
1. National End of Life Care Qualifications
• Level 2 and 3 Awards Awareness of End of Life Care
• Level 3 Certificate in working in End of Life Care
• Level 5 Certificate in Leading and Managing Services to Support End of Life
and Significant Life Events
11 units in all with a specialist communication unit
End of Life Care Learning Materials to accompany the qualifications – produced
by St. Luke's Hospice Plymouth under contract to Skills for Care
National end of life care qualifications – a guide for employers and learners
Explains the qualifications and links to the 6 steps programme.
173. Skills for Care’s
resources for EoLC 2
2. Common Core Principles and Competencies
These were developed to ensure workers have the training, education,
development and support they need to work with people at the end of
their lives. Common core competences and principles for health and
social care workers working with adults at the end of life
3. Workforce Development resources
Developed in partnership with Skills for Health and the National End of
Life Care Programme, the guide aims to ensure that workers involved in
supporting someone who is at the end of their life are properly trained
to be able to undertake their work effectively and appropriately.
a guide to workforce development to support social care and health
workers to apply the common core principles and competences for end
of life care.
175. End of Life Champions Network
Workshop
Lesley Adshead
Department of Social Work, Bereavement and Welfare
St Christopher’s Hospice
176. Palliative Care Social Work - Reaching out to
General Social Care
Social Care
Framework 2010 set
the Challenge
177. Our
approach
Flexible - developed in partnership with local councils,
taking account of local priorities and responsive to the needs
of the organisations as they become apparent
Multi-pronged - aimed at staff groups at all levels, across
services, and with crucial buy-in at senior level
Aiming to take local authorities beyond the delivery of
isolated training days to the more holistic approach we
believe is essential for the culture shift required
178. Core elements
Strategic reviews and planning with senior and
service managers as supporters and enablers of
end of life support
Development of end of life champions as an end
of life resource for their teams
Training and support tailored to the needs of
specific teams and individual team members as
professionals confident in supporting end of life
Broader consultancy and development work to
embed learning into practice
179. What we have learnt and what
keeps us going?
Being realistic
Being responsive – grasping opportunities
Being flexible
Being persistent
We have needed vision, willingness to take risks
and to challenge, creativity, and commitment to
service users
180.
181. South West Essex Community Services
Discharge Coordination Pathway
Supporting the transition from Secondary to
Primary care for people with end of Life care
Needs.
Carolyn Doyle
Lead Nurse for end of life care
Alison Drew
End of Life care Facilitator
182. South West Essex Community Services
Why do we need a co-ordinated
approach?
• High incidents of people coming out of hospital
without any evidence of advance care planning in
place e.g. PPC/PPD/DNACPR/Anticipatory Meds
• More than 70,000 people die in nursing and
residential care homes each year yet comparatively
little attention has been paid to end of life care and
its challenges in this setting (Percival 2013).
• People returning to hospital, often inappropriately,
often from care homes.
183. South West Essex Community Services
Poor discharges/lack of
communication/unsafe TTA,s
Frequent readmissions
Dissatisfaction with service
Dis-coordination, duplication
High readmission rate from
care homes
Stakeholders
Building trust
Integration/partners
Pathway design
Decided to pilot
Local landscape
184. South West Essex Community Services
Pilot Criteria
The pilot ran between September 1st 2011- August
31st 2012
The person being discharged must meet the
following criteria
Has end of life care needs
Known to Hospital Macmillan team
Known to Complex case management team or
Discharged from St Lukes In patient unit.
185. South West Essex Community Services
Pathway
Joint working with St Lukes/ BTUH CCMT
Patient
identified as
end of life
Discharge
being
planned
Discharge
notification
form
completed
Fax form
to EoL care
On Call
facilitator will
check details
Contact
discharging
professional
to discuss
Is patient safe to
discharge
Do relevant services know
about discharge
Advance Care planning in
place
Liaison and support if
needed
Post discharge follow up
as required.
186. South West Essex Community Services
Impact
During the pilot period we received a total number of
241 notifications (2 for people who deteriorated and
died pre discharge).
Significant increase in advance care planning
especially around
Anticipatory medication
Do not attempt Cardiopulmonary resuscitation
orders
Significant increase in discharges to care home
187. South West Essex Community Services
Discharged to
Home %
Care
Home %
26 83.87% 5 16.13%
6 60.00% 4 40.00%
15 75.00% 5 25.00%
10 62.50% 6 37.50%
13 56.52% 9 39.13%
15 68.18% 7 31.82%
15 78.95% 4 21.05%
10 52.63% 9 47.37%
10 71.43% 4 28.57%
14 70.00% 6 30.00%
17 70.83% 7 29.17%
13 54.17% 11 45.83%
164 67.77% 77 31.82%
Discharged to
2 people were planning for discharge to care home but
deteriorated prior to discharge.
188. South West Essex Community Services
Care Home discharges
0
2
4
6
8
10
12
Sep-11 Oct-11 Nov-11 Dec-11 Jan-12 Feb-12 Mar-12 Apr-12 May-12 Jun-12 Jul-12 Aug-12
Discharged to Care Home
189. South West Essex Community Services
Evaluation of Care Home Deaths
75 people discharged and received in to a care
home setting.
62 people subsequently died,
2 in hospital (3%) ,
2 died in a hospice (3%)
58 died in the care home (94%).
193. South West Essex Community Services
Deaths in the Pilot sample
Deaths in the pilot sample
During the period of the pilot there were 203 deaths, 84% of the 241
notifications.
Place of Death
People with care co-ordinated via the pilot
Home (including
Care Home
Hospice Hospital unknown
75% 17% 7% 1%
Comparison with local data from National end of life intelligence team
Home (including
Care Home
Hospice Hospital unaccounted
32% 4% 62% 2%
194. South West Essex Community Services
2 years on
April 2013 – March 2014
received 356 referrals
48% increase
98-100% have ACP in place
(PPC/DNACP)
100% have medication review
Integration/staff work alongside/shadow
Shared experiences and expertise
195. South West Essex Community Services
What now…..
Roll out across the healthcare
economy.
Linking into the coordination care
register
Building on a coordination centre
(SAAS)
199. 2
Background
Oakhaven hospice secured funding following a
successful bid in a Hampshire wide project called
‘Situated Learning’
In accordance with (what was) the South Central
Strategic Health Authority education strategy
Following the End of Life Care Strategy of 2008
Funding ran out at the end of March 2013....
Oakhaven agreed for the project to now be ‘ongoing’
201. 4
What is situated learning?
First proposed by Lave and Wenger (cognitive
anthropologists) in 1991
Similar to the work of Dewey (1938)
A model of learning in ‘a community of practice’
learning that takes place in the same context in which
it is to be applied
A social process where knowledge is ‘co-constructed’
Learners benefit from the knowledge of others who
have ‘more experience’ of a shared interest
Relies on interaction and encourages evolving
202. 5
Values and principles
Relevant
Builds on experience
Encourages communication
Tailored to perceived need and not just ‘prescriptive’
Focuses on a persons potential and capacity to develop
and not on limitations
Helping to develop relationships within the
community
204. Education team
Head of education, Lucy Smith
Education secretary and situated learning project
coordinator, Judy Verrell
Educational facilitator, Jenny Caine
7
205. Phase one – Care homes
Contacted all 43 residential and nursing homes in
catchment area
‘Identify through discussion any palliative care needs
your staff may have, and formulating a supportive
education/training programme accordingly’
Meet with staff (see example of questionnaires)
8
206. 9
PLANNING
Education session Working alongside staff
FILL IN QUESTIONNAIRE/DISCUSS OPTIONS
Determine want/need
INTRODUCTION TO SITUATED LEARNING
Meet with manager And/or staff
207. How Many care homes have been involved?
Participating
homes 76%
Non
participating
homes 24%
208. Phase two – Domiciliary Care
Identified all care agencies in our catchment area
Around 40
Some based local, others cover a large area
Same introductory process as care homes
11
209. How many agencies have been involved?
Participating
agencies 46%
Non-
particpating
agencies 54%
210. 13
Content
Some sessions are booked in advance, however some
are booked when ‘need’ arises
Working alongside staff while caring for residents with
palliative or end of life needs
Liaising with our Community Nurses and Hospice at
Home team
Providing ‘overview’ sessions on palliative and Eolc
Some requested specifics ie advance care planning or
end of life care plans
Syringe drivers (support only)
211. Dementia and pain assessment/ Eolc
Symptom management
Caring for the dying
Communicating with families/self care
A session formulated specific to a resident/clients
diagnosis, for example case study analysis and future
planning
Storytelling and discussion a REAL focus
Questions and answer session
Reflection plays a big part in all sessions!
14
212.
213. Resources
End of life care file
Useful websites
Email and phone support
Facebook page
Website
Link nurse groups
16
214. Link nurse groups
Care home link group meets monthly
Has been running for 2 ½ years
Domiciliary link group meets every two months
Has been running for 8 months
17
215. Updates
Information
‘projects’;
ie communication books, discharge checklist, end of life
care checklist for Doctors
Visitors;
ie Ambulance crew, soul midwife, Doctor, nurse
prescriber, district nurse, complementary therapist
18
216. 19
Barriers
Initially, reporting to commissioners
TIME! And finding the ‘right’ time for each setting
Travel and distance
Unrealistic expectations of managers
Cancellations
Turnover of staff
Negative media influence (Liverpool care pathway,
assisted dying)
Differences between uptake of care homes and
agencies
217. Occasionally some people not ‘engaged’ and it can be
difficult to manage
20
218. 21
Looking to the future
Contact homes and agencies again (especially those
not involved)
Closer working with Hospice @ Home team
Train the trainer (especially domiciliary care)
Reflective debriefing groups
More work with South Central Ambulance Service
More work within Learning disabilities
Local hospitals
220. 23
Dewey J (1938) Experience and education. New York:
Touchstone
Lave J and Wenger E (1991) Situated learning.
Legitimate peripheral participation. Cambridge:
University of Cambridge press
221. The Route to Success
in End of Life Care -
Achieving Quality in Acute Hospitals
The Transform Programme
222. Six Critical Success Factors
1. Leadership engagement
2. Strategic alignment
3. Governance
4. Measurement
5. Capability and Learning
6. Resourcing(people)
Ref How to guide for acute hospitals(2012)
223. Key Enablers
Individualised
end of life care
plan
Rapid Discharge
Pathway (RDP)
Amber Care Bundle
(ACB)
Electronic Palliative
Care Coordination
System (EPaCCS)
Advance Care Plan
(ACP)
Core metrics-
Organisational
Ward
identify areas of best
practice leading to
shared learning
RTS Acute Hospitals
& How to Guide
How to implement
on the ward?
224. Project Plan
Pre audit work: Case note review, skills knowledge
and confidence questionnaire, Bereavement Survey.
Deliver the End of Life Care Champions Course
Have an individual plan for each identified ward.
Produce progress reports
Post evaluation and way forward.
225. End of Life Care Champions 5 day
Course
Wards attending
J6,H4,F7,F10, CAU, OASIS UNIT, Ward 6 and 21.
One member of the Medical Team
Ward Manager
Palliative/End of Life Link, Trained Nurse
Senior Care / Care Assistant
226. End of Life Care Champions 5 day
Course
2 days facilitated learning, 16th and 17th June
2 days Hospice placement, 18th June-10th July
1 day facilitated learning, 11th July
6 month learning in action, one hour per month with
Facilitator/MDT for After Death Analysis
SPCT shadowing opportunity
227. Ward based training -10 months.
EPaCCS- co ordinate my care
Advance Care Planning/Difficult conversations
Amber Care Bundle/Difficult conversations
Rapid discharge
Individualised End of Life Care Plan
Pain and symptom control
Syringe driver
Hydration and Nutrition/Mouth care/pamper pack
Care after death
Spirituality
228. Support given to ward by End of Life Care Facilitators
Specialist Palliative Care Team
Monthly significant event analysis
Ward Manager and EoLC Facilitator to meet as agreed
A to do list will be completed and updates given for
transform board
229. Influence What is it?
Why is it important?
How can you be more
influential?
231. How you can increase your influence
Create the right impression
Do what works and stop
doing what doesn’t
Develop your job role
232. Don’t let your body give the game away
Physical gestures account for more
than half the messages we send out in
daily life. “Best learn to read them”
••
233. What will the EoLC Team do?
Tailor Ward based teaching to suit individual ward
needs
Facilitate monthly SEA
Offer planned and as required ward based and
telephone support
Support Ward Managers with maintaining training
record and ensuring targets are reached
Implementation and audit of Transform
programme and EoLC Standards
234. What will the EoLC Team do?
Tailor Ward based teaching to suit individual ward
needs
Facilitate monthly SEA
Offer planned and as required ward based and
telephone support
Support Ward Managers with maintaining training
record and ensuring targets are reached
Implementation and audit of Transform
programme and EoLC Standards
235. Roles and Responsibilities
The End of Life Care Champions
The End of Life Care Team
Specialist Palliative Care Nurses
Spiritual Care Team
Palliative Care Consultant
Dieticians
Pharmacy
238. MyVision
The community is an equal partner
in providing appropriate health care
at the end of life.
239. Public Health & PalliativeCare
(‘Compassionate communities’)
• Health promotion concepts
– Prevention
– Harm reduction
– Early intervention
– Sustainability
240. Public Health & PalliativeCare
(‘Compassionate communities’)
• Health promotion
methods
– Authentic participation • WorkingWITH rather than ON
• Valuing non-professional
knowledge
• Learning rather than teaching
241. Public Health & PalliativeCare
(‘Compassionate communities’)
• Health promotion
methods
– Authentic participation
– Community
development
• Mutually defined priorities
• Care BY community members
• Supportive professionals
242. Public Health & PalliativeCare
(‘Compassionate communities’)
• Health promotion
methods
– Authentic participation
– Community
development
– Partnership
• Non-health organisations
• Community-led health
organisations
243. Public Health & PalliativeCare
(‘Compassionate communities’)
• Health promotion
methods
– Authentic participation
– Community
development
– Partnership
– Individual education
• Reduce ignorant social responses
• Increase support
• Address anxiety
244. Public Health & PalliativeCare
(‘Compassionate communities’)
• Health promotion
methods
– Authentic participation
– Community
development
– Partnership
– Individual education
– Community mobilisation
• Promote death education
• Promote community support
245. Public Health & PalliativeCare
(‘Compassionate communities’)
• Health promotion
methods
– Authentic participation
– Community
development
– Partnership
– Individual education
– Community mobilisation
– Enabling environments
• Address prejudice
• Improve social conditions
• Address inequities
247. Situation (2011)
• A majority prefer to die at home, but often can’t
• Caring can be isolating, exhausting and emotional
• Unsupported caring can have a devastating impact
• The last 50 years have “professionalised” death
• Often services exclude local communities
• Individualised care can be blind to the community
• Death and dying are not openly discussed in society
251. Response (2013+)
• Dying at home
• State of carers
• Unsupported care • Connect community development
and clinical services
252. Response (2013+)
• Dying at home
• State of carers
• Unsupported care
• Professionalisation
• Enable and value community
responses
253. Response (2013+)
• Dying at home
• State of carers
• Unsupported care
• Professionalisation
• Excluded communities
• Community forum
254. Response (2013+)
• Dying at home
• State of carers
• Unsupported care
• Professionalisation
• Excluded communities
• Individualised care
• Network development
255. Response (2013+)
• Dying at home
• State of carers
• Unsupported care
• Professionalisation
• Excluded communities
• Individualised care
• Death taboos
• Join general community care &
development networks
257. Compassionate Community Networks Project
• Objectives
1. Increased support for carers from their own networks
2. Reduced isolation for carers by increased community
connectedness
3. Increased capacity to support carers by the community
259. Compassionate Community Networks Project
• Implementation
2. Reduced isolation for carers by increased community
connectedness
• Network development
• Community development
260. Compassionate Community Networks Project
• Implementation
3. Increased capacity to support carers by the community
• (Inner circle mentors)
• (Outer circle transfers)
• Community development
261. Compassionate Community Networks Project
• Outcomes
“Her husband took over as key
person allowing her to be a
daughter.”
Hospice community nurse specialist
“He is now able to use the
people already known to him
that had wanted to be of help.“
Hospice community nurse specialist
“There’s a calmer situation all
round for the patient, carer and
family.“
Hospice doctor
275. Conclusion
– http://www.eventbrite.co.uk/e/the-
compassionate-community-
practitioners-day-registration-
11658523959
September 19th 2014
WESTON HOSPICECARE & HELPTHE HOSPICES
– http://www.phpci.info/#!about1/c1f7j
11th – 16th May 2015
4th INTERNATIONAL PUBLIC HEALTH &
PALLIATIVE CARE CONFERENCE
– http://www.phpci.info/
PUBLIC HEALTH & PALLIATIVE CARE
INTERNATIONAL (PHPCI - 2014)
ditch.townsend@westonhospicecare.org.uk
All health services should have:
(1) a population health approach
involving education and community
development;
(2) a primary health care approach
involving non-specialist front line
workers;
(3) a tertiary approach involving
specialists and inpatient facilities.
Palliative care has emphasised tertiary
approaches, with primary health care
in evidence in some places . A
population health approach is under-
developed, yet has the most potential
to enhance the quality of life and
sense of well being of the widest
number of people in dying and in loss.
Adapted from PHPCI
276. Delivering the Six Steps to
Success Programme:
challenges and strategies for success
277. Launched to all care homes in locality
35 care homes registered - up to 5 champions per home
Four half day teaching sessions each month
Four half day support sessions each month
Final portfolio assessment
Developed session together
The Initial Plan
Two mandatory sessions each month
279. What we did!
Give resources to use in practice
Take control and stay positive!!!!!!!!!!
Session to commissioners and council inspectors
One step session per month
One-to-one each month on portfolio development
Smaller groups - 2 champions
Representative if champion can’t attend
Changed order - step 4 first with manager
Cover induction at Launch
Set expectations
Charge for catch up session
Charge if DNA mandatory session
Two mandatory sessions/month
No additional dates until all full
Involve manager if concerned
Simplified audit tool
Remind, remind, remind
Workbook for staff
Care home forum
Support with annual audit and action plan
Stand alone sessions for those who can’t commit
Six Steps Taster sessions