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Thames Valley:
National perspective
for palliative and end
of life care –
challenges and
priorities
Professor Bee Wee
NCD for End of Life Care
NHS England
7th May 2015
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Distribution of adults in need of palliative care at the end of life
by age and disease groups
Source: Global Atlas of Palliative Care, 2014 (WHO)
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Distribution of children in need of palliative care at the end of life
by disease groups
Source: Global Atlas of Palliative Care, 2014 (WHO)
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Hospital and social care costs
Estimated average cost of care services in each of the last twelve
months of life
(n = 73,243)
Source: Understanding patterns of health and social care at the end of life, Nuffield Trust,
Oct 2012
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Average hospital costs per day over final 90 days of life
(n = 1.22 million)
Source: Exploring the cost of care at the end of life:
Georghiou and Bardsley, Nuffield Trust, Sept 2014
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Multi-aspect challenge
Sociological
Demographic
Epidemiology
Scientific
Workforce capacity
Care systems
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Additional Challenges
Sociological
Demographic
Epidemiology
Scientific
Workforce capacity
Care systems
Ideology
Well-meant assumptions
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Challenges for commissioning
• End of life care needs to be all-pervasive
• Need to commission across whole spectrum: from generic care to specialist palliative care – multiple providers
• Plurality of providers:
• health and social care (generalist)
• NHS and voluntary sector (specialist)
• Measurement of outcomes and experience are difficult:
• intrinsically difficult because of subject
• no suitable tools exist
• Incentives and levers can go wrong very easily
• Political, public and interest – funding does not always follow
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Wider context: key developments
Integrated pioneers
Better Care Fund
Personal health budgets
Integrated Personalised Commissioning……
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Leadership Alliance for the Care of Dying People
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Priorities for Care
Standards and audit
Regulation
Education and
training
Research
Commissioners and service providers
Embedding into daily practice
Public attitude and understanding
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NICE Quality Standard
2008 National Strategy ‘legacy’
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Headline ambitions
• Getting care as good as it can be wherever the person is -at all stages
• Care that matches the person’s preferences as closely as possible and meets needs as far as possible
• Staff who have confidence to bring these skills into other parts of care – i.e. further upstream and laterally
• Reducing the inequality gap
• Everybody feels responsible for playing a positive part in end of life care
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Engaged, involved and compassionate communities
House of Care framework – for End of Life Care
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Engaged, involved and compassionate communities Metrics to
support
commissioning
– insights,
indicators
National
development
currencies
Commissioning
Toolkit
Input to Seven
Day Services
programme
NHS Standard
Contract
Specialist
palliative care
service
specification
Individual-
level palliative
care clinical
dataset
Incorporating
EoLC into
service specs
for specific
groups
Knowledge
hub
NICE
guidance
CQC’s
thematic
review
One Chance to
Get it Right –
Priorities for
Care
National
audit
Care
coordination
- EPaCCS
Communities
of practice
Transform ing
EoLC in acute
hospitals
Priorities
for Care of
Dying
Person
Guidance
personalised
care
planning
Data and
intelligence
know-how
Other
professional
know-how
Information
Carers
VOICES-SF
PfC – secure
and detained
settings
Inequalities
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How do any of these fit together?
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One example: specialist palliative care
Clinical Data Set
Currencies
Improving experience, outcomes
and commission
ing
Service specifica
tion
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Another example:
Capturing insights: different levels
5. National level
4. Locality
3. Organisation level
2. Clinical area
1. Individual-staff interaction
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Mapping documents….
23/06/
2015
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NCD focus: system leadership and
support commissioning
• Contributing to development of Ambitions for End of Life Care: system-wide
• Metrics
• clinical outcomes
• experience
• Levers for improving quality and quality indicators
• Supporting commissioning
• generic end of life care
• specialist palliative care
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Expectations
• One Chance to Get it Right: Priorities for Care of the
Dying Person
• Electronic shared records system (EPaCCS)
• Improving end of life care in acute hospitals
• Inequities: condition, time of day/night, location of
care, population groups