Information Standards for End of Life Care

WELCOME

Friday 17 April 2015 WebinarInformation Standards for End of Life Care

(ISB150) supporting the implementation of Electronic Palliative Care Coordination

systems (EPaCCs)

Information Standards for End of Life Care (ISB150) supporting the implementation of Electronic Palliative

Care Coordination systems (EPaCCs)

Friday 17 April 2015

12.30pm – 1.30pm

Chris Wike & Adam HatherlyNHSIQ & Health & Social Care Information Centre

&

Beverley MatthewsLTC Programme Lead, NHS Improving Quality

Bev MatthewsA nurse by background, Beverley has worked extensively throughout the NHS in a variety of clinical, managerial and strategic roles. Beverley’s current role as Programme Delivery Lead for Long Term Conditions Improvement Programmes: LTC Year of Care Commissioning Model and LTC Framework. Prior to joining NHS Improving Quality in April 2013, Beverley was Director of NHS Kidney Care and NHS Liver Care.

Passionate about service transformation through developing networks and leading complex programmes. Providing strategic leadership to partners within health communities, managing stakeholders and working across agencies.

Adam Hatherly, Senior Solution Architect, Health & Social Care Information Centre

Working to support care coordination for long term conditions and end of life care, focusing on developing national resources to support local delivery of solutions. Adam is closely involved in the development of national interoperability strategy and standards.

Christine Wike, NHSIQ Delivery Support Manager for End of Life care

Supporting the roll out of NHS IQs 2 national programmes : The Transforming Care in Acute Hospitals and Electronic Palliative Care Coordination Systems (EPaCCS) . Working in partnership with the National End of Life Care Intelligence Network in Public Health England in the development and maintenance of the National Information Standard (ISB150) for End of Life Care that supports Electronic Palliative Care Co-ordination Systems (EPaCCS).

Meet the Speakers

Beverley Matthews

LTC Programme LeadNHS Improving Quality

[email protected]

LTC Year of Care Commissioning Programme:

• 5 Early Implementer sites

• 35 Fast Followers

• Whole Population Datasets

• Implementation Guide

• Simulation Modelling

• Specialist Support Team

LTC Person Centred CareImprovement Programme:

• 40 Early Implementer sites

• 4 regional learning networks

• Snapshot Survey

• Simulation Modelling

• Specialist Support Team

Long Term Conditions Learning Community

• LTC Dashboard

• Case Studies

• Lunch and Learn Series

• The Bulletin

• Specialist Support Team

@NHSIQ @bev_j_matthews #LTCimprovement #LTCyearofcare

LTC Lunch & Learn Series ….coming soon…

Date Webinar Hosted by Bev Matthews &

29 April 201512:00 – 13:00

Information Sharing for Care Coordination Adam Hatherly, HSCIC&

Christine Wike, NHSIQ

1 May 201512:30 – 13:30

Information as a Therapy Mark DumanMRPharmS DirectorMonmouth Partners

6 May 201512:30 – 13:30

Prevention & Effective Interventions inFrailty

Helen LyndonNurse Consultant Older People, Clinical

Lead Frailty, NHS England

27 May 201512:30 – 13:30

Primary Care Workforce for the 21 Century Webinar

Sharon LeePrimary Care Workforce Facilitator

South Kent Coast CCG

9 June 201512 noon – 1pm

Health 1000 Rob MeakerBarking, Havering & Redbridge

To pre-register email [email protected]

2014 Position

Chris Wike Delivery Support Manage EoLC NHS IQ

Information Standard for End of Life Care (ISB150);Supporting implementation of Electronic Palliative care Coordination Systems -EPaCCS

Agenda

Learning Outcomes

• Understand its purpose including the requirements , structures and definitions for the standard

• Identify the core content to be held in an EPaCCS system

• Understand how the standard supports care coordination and supports choice in End of Life care

Purpose

• The End of Life Care Co-ordination (EoLCC) National Information Standard (ISB 1580) aims to improve the co-ordination of care through better communication of people’s wishes and preferences for care at the end of life.

• The standard specifies the core content to be held in Electronic Palliative Care Co-ordination Systems (EPaCCS), or paper-based care co-ordination systems.

• Evidence is emerging that the standard improves care co-ordination, supporting more people to die in their place of choice (What we know now 2013, PHE National End of Life Care Intelligence Network).

• When a person is approaching the end of life, all professionals involved in their care should have secure access to complete and up-to-date information regarding their expressed preferences.

It is a case of the right person, having the right information, at the right time, which can make all the difference to the quality and experience of care for an individual, their family and carers.

Background

– EPaCCS support communication of people’s preferences and choices regarding end of life care with professionals delivering care.

– ISB1580 identifies the core content held in EPaCCS

– Standard was approved in March 2012 / Amends Dec 2013

– Joint SROs: NHSE and PHE

13ISB1580: Change Proposal Feb 2015

Programme Governance

Summary Core Data Items1 Consent

Consent Status*2 Record creation* date AND record amendment* dates3 Plan and requested actions

Planned review dateCardiopulmonary Decision – whether a decision has been made, the decision, date of decision, location of the documentation and date for reviewPreferred Priorities for Care

4 Person DemographicsPerson Name* including preferred nameDate of birth*Person address*NHS Number*Person telephone numberGenderRelevant contactsMain carer name and contact detailsAvailability of carer support*

5 Special requirementsNeed for interpreterPreferred spoken languageFunctional status and disabilityEnd of Life Care Tools in use eg Gold Standards Framework

6 Information and advice givenIs main carer aware of person’s prognosis?Family member/carer informed of cardiopulmonary resuscitation clinical decision

7 GP PracticeGP Name*GP Practice details*

8 Key workerNameTelephone number

9 Services and care Names of health and social care staff and professionals involved in careProfessional groupTelephone number

10 DiagnosesPrimary end of life care diagnosis*Other relevant end of life care diagnoses and clinical issuesLikely prognosis

11 Allergies or adverse reactions

12 Medications and medical devicesWhether a ‘just in case box’ or anticipatory medicines have been prescribedWhere these medicines are kept

13 Legal informationAdvance statementRequests or preferences that have been statedAdvance Decision to Refuse Treatment (ADRT)Whether a decision has been made, the decision, date of decision and the location of the documentationLasting Power of Attorney or similarName and contact details of person appointed with Lasting Power of Attorney (LPA) for personal welfare• without authority to make life-sustaining decisions• with authority to make life-sustaining decisions

14 Person and carers’ concerns, expectations and wishesPreferred place of death 1st and 2nd choices if madeNames and contact details of others (1 and 2) that the person wants to be involved in decisions about their careOther relevant issues or preferences around provision of care?

15 Actual place of death

16 Date of death

* Indicates mandatory items

2015 ISB Proposed Changes- overview

Responding to issues raised by implementers, IDSMG, CPAGLCP phased out July 2014 and Judicial Review Ruling: DNACPRIncluded:• Minor editorial• New data item: last days/weeks of life• Data Set Amendments:• - Carer terminology• - DNACPR• - Preferred & actual place of death• - Summary table• - NHS number- status• - ICP removal term• - Title of the standard• Amendments to Guidance Documents• Aligns with standards for the clinical structure and content of patient

records published by Academy of Medical Royal Colleges (AoMRC).

17ISB1580: Change Proposal Feb 2015

The guidance has been endorsed by:

Association for Palliative MedicineAssociation of Directors for Adult Social ServicesRoyal College of NursingRoyal College of GPsRoyal College of PhysiciansCollege of ParamedicsCollege of Emergency MedicineCollege of Occupational TherapistsChartered Society for PhysiotherapyBritish Geriatrics Society

http://www.endoflifecare-intelligence.org.uk/resources/publications/implementation_guidancehttp://www.endoflifecare-intelligence.org.uk/resources/publications/record_keeping_guidance

EPaCCS -

By 2015 there will be 70% rollout of EPaCCS across England (baseline 15%)

Levels of ambition

Spread and adoption

Update: national information standard & EPaCCS survey20

2009

fullpartialplanned

implementation

Pilot sites

2012

EPaCCS Implementation 2013

Update: national information standard & EPaCCS survey 21

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

IT systems being used (operational & planned)

Update: national information standard & EPaCCS survey 22

2014 /15 Our assumption on current position

Has a "IT system"conforms with EPaCCs(partial to full)with plans: from earlyto well developed plans

No Plans

unknown

43%

25%

31%

1%

Supporting Wider Implementation –& next steps

• Maintenance of ISB Standard for End of Life Care –Progressing with change application - submit to SCII June 2015

• Lessons learnt published August 2014

• Providing ongoing support for implementation sites

• Regional Events - SCNs

• Plans to commission an evaluation 2015/16

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

Further Information ;

http://www.endoflifecare-intelligence.org.uk/national_information_standard /

http://www.nhsiq.nhs.uk/improvement-programmes/long-term-conditions-and-integrated-care/end-of-life-care/coordination-of-care.aspx

http://coordinatemycare.co.uk /