www.england.nhs.uk

How does

EPaCCS fit in the

national agenda?

Prof Bee Wee

NCD for End of Life Care

NHS England

2nd July 2015

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How does EPaCCS fit in the national agenda?

Ambitions for

End of Life Care:

2015-2020

NICE Quality

Standard 13:

2011

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End of Life Care ‘agenda’

• Care Planning:

“…….For greater effectiveness, the care plan should be available to all who have a legitimate reason to access it (e.g. out of hours and emergency services)”

• Coordination of care:

“…..it is recommended that PCTs create locality-wide registers for people approaching the end of life, so that they can receive priority care”

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NICE Quality Standard for EoLC

Quality statement 8

• People approaching the end of life receive consistent

care that is coordinated effectively across all relevant

settings and services at any time of day or night, and

delivered by practitioners who are aware of the

person's current medical condition, care plan and

preferences.

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2 slides on the restructuring of health services omitted

on request by the presenter

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NICE Quality Standard

2008 National Strategy ‘legacy’

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Engaged, involved and compassionate communities

Framework for End of Life Care

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Roof of House:

Support the continuing implementation of digital record-sharing systems to improve care coordination, including:

• The ability and willingness to share data across care settings

• Ensuring that systems are capable of capturing and making explicit the individual’s preferences and goals, and how they wish these to be achieved

• Working with PHE to ensure that the National Information Standard for the content of EPaCCS remains up to date, fit for purpose and is in alignment with the proposed Information Standard for personalised care planning

Source: Actions for EoLC: 2014-16

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Ambitions for End of Life Care

Care is coordinated

• I get the right help at the right time from the right

people. I have a team around me who know my

needs and my plans and work together to help me

achieve them. I can always reach someone who will

listen and respond at any time of the day or night

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Wider context: key developments

Integrated pioneers

Better Care Fund

Personal health budgets

Integrated Personalised Commissioning

New models of care……

www.england.nhs.uk 10/07/

2015

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Personalised Health and Care

By April 2016:

• NIB will agree a core ‘secondary uses’ dataset that all NHS-funded providers will have to make available

From Mar 2018:

• All individuals will be able to record their own comments and preferences on their care record

By 2020:

• All care records will be digital real-time and interoperable

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NIB workstreams

1 Patients and public-facing:

1.1 – Digital access to health and care information and transactions

1.2 – Access to endorsed set of NHS and social care apps

2 Data and intelligence roadmaps:

2.1 – Giving professionals access to all the data they need

2.2 – Comprehensive data on outcomes and value of service

3 Make quality of care transparent – publishing comparative info

4 Build and sustain public trust – roadmap to consent based information

sharing and assurance of safeguards

5 Support innovation and growth

6 Supporting care professionals to make best use of data & technology

7 Assure best value for tax payers and open up existing infrastructure

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Alignment with NIB agenda….e.g.

EPaCCs

NIB 1.1 NIB 2.1 NIB 2.2 NIB 4

ISB1580 exists –

change app

due for

submission to

SCII June 2015

“Establish a

national digital

standard for people

at the

end of their life”

Learning from

ISB1580, CPAG,

and EPaCCs user

group could

support this?

‘Implementation of

digital data

standards by

2018/2020 ‘

Ongoing work

with PHE on

Palliative Care

Dataset

‘A Roadmap for

comprehensive data

on outcomes and

value of service

now’

Learning from the

EPaCCs consent

model?

‘Building trust on

wider use of

sensitive data….’

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Where have we got to with EPaCCS?

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Spread and adoption

2009

full partial planned

implementation

Pilot sites

2012

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EPaCCS Implementation 2013

18

Operational

Planning started

Planning not started

Not known

PHE Centre boundary

Operational defined as; when there is an electronic system linking care providers across a locality

CCGs

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Baseline Summary: Nov 2014

No. %

Total: CCG with "IT system" conforms with EPaCCs (partial to full) 91 43%

Total: CCG with plans: from early to well developed plans 53 25%

Sub total 144 68%

Total: CCG no plans 2 1% Total: CCG current position is unknown

65 31%

Grand total 211 100%

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IT systems being used (operational &

planned)

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Typical EPaCCS Technical Approaches

Shared Clinical System: Dedicated Care Planning System:

SCR as an EPaCCS: Clinical Portals:

• Common Technical Challenges:

• Interoperability (Double-entry, Keeping records in-sync)

• Consent (System-specific sharing models)

• Reporting

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web based care planning for people

with long term conditions

Care planning on EPaCCS

EPaCCS reporting Outcomes

produced by NEoLCIN

Quality improvement methodology

5 Ps

Value steam mapping and coaching for improvement

model

Linkage with Local Innovation

Coalitions

AHCN, Clinical Networks

Senates

Outcomes used to inform

public health initiatives

around advance care

planning

Interoperability between web based

advance care planning sites (eg

MyDirectives), GP systems and

EPaCCS- Linkage to NIB and

deliverable for hand held records pilot

Community development/

public health approaches

to advance care planning

Dying Matters Coalition

ACP wishes appear on

GP system to take

conversation further

linkage 2 % DES and

new models work

Localised EPaCCS reporting

done either by NEoLCIN or local

reporting structures eg CSUs

Combination with HES/ONS datasets to

look at outcomes done by NEOLCIN in

conjunction with HSCIC

Production of routine

reports fed into CCGs

about local activity –

practice level data, run

charts to show on going

progress

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Support from ‘centre’

• Evaluation of national pilot sites

• Economic evaluation

• National Information Standard

• NHS Improving Quality: continuing implementation

• Work on interoperability of IT systems

• ‘SWAT’ team approach

• Funding awards for specific projects

• Mainstream into National Information Board workstreams

• Using levers available: Planning Guidance, CCG assurance framework, etc.

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Remembering core purpose……

From structures and processes to

outcomes that matter to the individual

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Conversations

Care planning

Recording and sharing

Influence on care, decisions

and further conversations

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Community participation

and development

Commissioning and

accountability

Local services: provision &

improvement

Person-centred care

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Metrics: what can EPaCCS offer?

Place of death

Recollected

views of

bereaved

relatives

Discussion about

preferences and

priorities offered and

documented

Extent to which

preferences and

priorities honoured

Experience of care

Identification of

inequities – exploring

features

What else??

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Challenges

• Attitudes, competence and behaviour

• Staff

• Patients and families

• Public

• Technical

• IT ‘kit’

• Information sharing

• Imagination for potential

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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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Opportunity

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“It is not the sole responsibility of any one organisation

but a ‘collective endeavour requiring collective

efforts and collaboration at every level of the

system’”

Quality in the New Health System

National Quality Board, Jan 2013