1. Gold Standards Framework in Care Homes
Nikki Sawkins – GSFCH Lead Nurse
20/04/2017

2. Plan of session Context of GSF in End of Life Care
What are the challenges?
What is GSF in Care Homes ?
Evaluation and Experiences of others
Developments and Plans
Are you interested? – Next Steps
20/04/2017

3. End of Life care
Do any of your patients ever die? Then you need to think about end of life care.
20/04/2017

4. Clarification of Terms
End of Life care
Pts living with the condition they may die from- weeks/months/ years
pts with advanced disease
3 types of pt (cancer, organ failure ,frail elderly /dementia pts )
‘Ante-mortal’ care like ante-natal or early life care
Supportive Care
Helping the patient and family cope better with their illness
not disease or time specific, ‘less end stage’
Preferred by some specialists- ‘everyone needs supportive care’
Palliative care
holistic care (physical psychological, social, spiritual )
specialist and generalist palliative care
Some regard as overlapping or following curative treatment
Terminal care
Diagnosing dying-care in last hours and days of life
End of Life Care
Supportive Care
Palliative Care
Terminal Care
Death
20/04/2017

5. DEMOGRAPHIC TIME BOMB
More people are living longer, with serious disease and increased symptom burdens
Almost double life expectancy in 100 years
Increased complexity in looking after patients with advanced disease at the end of their lives
20/04/2017

6. ‘Why are we leaving it to luck?’ Joanne Lynn
“What will we need when we have to live with a fatal disease?
We need reliability, We need a care system we can count on- Doing RIGHT thing at RIGHT time
To make excellent care routine we must learn to do routinely what we already know must be done
All that it takes is innovation, learning, reorganisation and commitment”
20/04/2017

7. Added Value 2: Caring for people with non-malignant conditions and the frail elderly
Death
High
Low
Time
Function
Death
High
Low
Time
Function
Organ failure 6 5
Cancer
Death
High
Low
Time
Function
GP has 20
deaths per
year
Vision for the future of pall medicine
3 trajectories
3 dimensions of need
Hospice, hospital, and community including nursing homes
Wide construct of palliative care
But focus
Dementia, frailty and decline 7
Other 2
20/04/2017

8. Key Factors with end of life care of elderly
Multiple co-morbidities
Increasing memory loss/dementia
Difficulty predicting prognosis
Difficulty predicting dying phase
Complex social/ health factors
Need protection from over intervening - eg DNAR, trolley deaths
20/04/2017

9. Place of death Higginson I (2003) Priorities for End of Life Care in England Wales and Scotland National Council
Place: Home Hospital Hospice CareHome
……………………………………………………………………………
Preference 56% % % %
Cancer % % % %
All causes 20% % % %
20/04/2017

10. Gold Standards Framework
3 Programmes of work:
GSF in Primary Care
GSF in Care Homes
EOLC developments and support
20/04/2017

11. The Gold Standards Framework
A framework to deliver a
‘gold standard of care’
for all people approaching the end of their lives
A systematic approach to optimising the care delivered by healthcare professionals
20/04/2017

12. A good death for all
“Our aim is that every person should be able to live well and die well in the place and in the manner of their choosing”
But how?
20/04/2017

13. Gold Standards Framework in Community Palliative Care
The Aim for Primary Care and Care Home teams:
to develop a practice-based/care home based system to improve
the organisation and quality of care of patients/residents in the last year/s of life in the community/care home
So generalist better dovetail skills with specialists
20/04/2017

14. Head Hands and Heart of Community Palliative Care
- process/organisation
- systems
- ‘how to do it’
HEAD
- knowledge
- clinical competence
- ‘what to do’
HEART
-compassion/care
human dimension-’why’
- experience of care
20/04/2017

15. The Gold Standard of end of life care
“The care of ALL dying patients
is raised to the level of the best.”
(NHS Cancer Plan 2000)
20/04/2017

16. GSF 3 Steps : ……then provide
3. Plan
2. Assess
+ communicate
1. Identify
20/04/2017

17. 5 Goals of GSF Patients are enabled to have a ‘good death’
1) Symptoms controlled
2) Preferred place of care
3) Safe + secure with fewer crises
4) Carers feel supported, involved, empowered, and satisfied.
5) Staff confidence, teamwork,
satisfaction, co-working
with specialists and communication better.
20/04/2017

18. 7 Key tasks/ standards-The GSF 7 Cs
C1 Communication
SC Register and PHCT Meetings, Pt info, PHR,
Advanced care planning (ACP) eg PPC
C2 Coordinator
Key Person, assessment tools eg PEPSI COLA
C3 Control of Symptoms
Assessment, body chart, SPC ,ACP etc
C4 Continuity Out of Hours
Handover form + OOH protocol
C5 Continued Learning
Learning about conditions on patients seen
C6 Carer Support
Practical, emotional, bereavement, National Carer’s Strategy
C7 Care in dying phase-
LCP / ICP for care in last few days
20/04/2017

19. Underlying assumptions of GSF
Care for people who are dying is important!
Most want to give best end of life care –GSF enables and encourages this
Developed from primary care for primary care
Developed and adapted for care homes by care homes ‘from the bedside not the boardroom’
Raise awareness of dying pts and measures
Framework not prescriptive -Adapt and adopt-
Becomes standard practice -’this is what we do’
Patient/resident focussed- Proactive- Think of future needs
Encourages creativity and pride in our work
National momentum-Share learning and ideas with others
If it was you……….
20/04/2017

20. In hours Proactive Palliative Care- Avoidance of crisis-eg GSF/GSFCH
Anticipatory care helps avoid crises
-improved support for residents, families + staff
reduction in hospital/hospice
admissions
(12% reduction in crisis admissions at EOL - phase 2)
achievement of preferred
place of care/death
(8% reduction Hospital deaths)
….and reduce fear
20/04/2017

21. GSF Supported Spread Cascade
National team
GSF Project group
SHA, Ca Network
Facilitators
Co-ordinators
20/04/2017

22. GSF Spread UK wide Use of GSF
About 3800 practices – over a third of all practices in England. Over 80% of PCTs
Over half practices in Scotland, a third in Northern Ireland, beginning in Wales and other countries
20/04/2017

23. So… What do we know?
20/04/2017

24. GSF Evaluation Nationally
Better identification and tracking of patients
More noting+attaining preferred place of death
Better communication, teamwork and planning
Fewer crises/admissions
Better organisation + consistency of standards eg use protocols, assessment tools, information, bereavement care , even under stress
Better co-working with specialists
20/04/2017

25. GSF Evaluation Nationally
Attitude, approach, awareness – qualitative factors that underpin the culture of practice, hard to measure, but often the most valuable
Processes and patterns of working – practical system redesign processes that are more structured and formalised
Outcomes – reduces hospital admissions, reduced hospital deaths, more advance care planning discussions
GSF Evaluation by the University of Birmingham
20/04/2017

26. GSFCH Care Homes Planning- 2003/4- GSF adapted for Care Homes
Phase 1 pilot- -May- Dec 04
12 care homes in 6 areas
Report March 05
Phase 2 pilot-June 05- Feb 06
100 care homes with 35 facilitators-18 /28 SHAs
Research study Birmingham University funded by Macmillan
Phase 3 Programme -June 06- Feb 07
About 250 care homes – 3 bases –Crawley phase 3a
Continuing evaluation
Phase 3b – Crawley and Phase 4 Programme June 07 –March 08 Open and Commissioned areas.
20/04/2017

27. Stage III Consolidation + Sustainability
Stage I Preparation
Stage II Training
Stage III Consolidation + Sustainability
3-6 months
4 workshops in 9 months
9 – 12 months 
Awareness Raising Meeting
Local Coordinators Meetings
Workshop 1
Workshop 2
Workshop 3
Workshop 4
GSFCH Accreditation
 
     
ADA
After
Before
Final
Appraisal
Ongoing ADA
Enrolment of Care Homes
20/04/2017

28. Gold Standards Framework in Care Homes - GSFCH
Aims
To improve quality of end of life care
To improve collaboration with primary care and specialists
To reduce admissions to hospital in the last stages of life
20/04/2017

29. Context
Half a million people live in Care Homes-about 1% Approx 20% people die in Care Homes
86% all deaths in people over 65, 51% in people over 80 For every NHS bed, there are 3 Care homes beds
The sector employs about 1.2 million people
People stay on average years in Nursing Homes
An average N. Home with about 30 beds might expect about 1 death/ month, or about a third/quarter turnaround /year
20/04/2017

30. “ If you are old and in a care home, you know you are probably going to die quite soon. Most older people don’t think that dying is a tragedy, though they do think that dying with unresolved issues is.”
Prof Ian Philp
National Director for Older people
The Times Sat
20/04/2017

31. End of Life Care- Getting it right
They’ll never forgive you
if you don’t
They’ll never forget you
if you do
20/04/2017

32. Experience of GSF in Care Homes
Attitudes, awareness and approach
eg confidence all staff, care needs focus, proactive care
Patterns of working, structure/ processes
eg communication all staff, recording, information sharing
Outcomes
eg more advance care plans, fewer crises,
better quality of dying, staff feel valued
20/04/2017

33. Does using GSF help patients with end of life care needs in care homes?
It helps coordination and communication
It helps confidence of staff
It helps us focus and measure
It helps kick start changes
It helps specific things like needs based coding, Advance care plans, anticipatory prescribing, communication with GPs etc
Y E S
20/04/2017

34. GSFCH Open Programme Plan Phase 4 -Walsall
ADA ADA
Preparation Introduction Consolidation consolidation/embedding
July 2007
…………..First gear………….Second gear………..Third gear……….Fourth gear
Workshops
26 Sept Dec Feb May 08
20/04/2017

35. Four Gears Getting going Moving on 3. Gaining Speed 4. Cruising
Coding, Register
Meeting,
Coordinator
Moving on
Assessment of symptoms + Advanced care Planning
Out of hours continuity
Education and reflection
3. Gaining Speed
Education and reflection
Carers and family support Bereavement (and staff)
3. Care in Final days
4. Cruising
Sustain
Embed
Extend
20/04/2017

36. Phase 4 Evaluation
1. After Death Analysis – Electronic Format – Register on line
Background information
Last 5 patient deaths before and after GSF introduction
What went well, what didn’t go so well, what could we do better.
Feed back of information.
20/04/2017

37. Online After Death Analysis (ADA) Audit Tool
20/04/2017

38. Networking and speed-dating
Sharing experiences with others – key to learning,finding solutions to some of the challenges, sharing good ideas, handy hints.
Eurekas ‘Things that have worked for us……’
‘Speed dating’- capturing specific topic issues
Good Practice Guide – shared learning and experience
20/04/2017

39. SO WHAT!
20/04/2017

40. Reactive patient journey- MR B in last months of life-
Care Home –no discussion wishes for end of life (only burial/cremation) -no PPOC discussed or anticipated
Problems with symptom control-high anxiety
Crisis call eg OOH-no plan or drugs available - GP sent ambulance
Admitted to hospital – disorientated.
Dies in hospital ?over intervention/medicalised
Carer support in grief by care staff
No reflection/improvements by care home/GP
? Inappropriate use of hospital bed
20/04/2017

41. GSF Proactive pt journey- Mrs W in last months of life
Coded on Register-discussed at Care Home GSF meeting
Focus of care at stage of life
Regular discussion and planning with care home/GP/SPC - proactive care
Assessment of symptoms -referral to SPC-customised care for resident
Carer involvement in care/decision (residents wish)
Advanced Care Plan completed with resident and family - Preferred place of care noted and planned.
Handover form issued –ACP wishes – anticipatory drugs issued in care home
End of Life pathway/LCP/protocol used
Pt dies in preferred place- the care home fully supported by well trained staff. Bereavement support – for all .
Staff reflect-ADA and SEA - audit gaps improve care, learn
20/04/2017

42. GSF and GSFCH is part of the jigsaw
GSF/GSFCH is part of the jigsaw to enable proactive end of life care for all.
20/04/2017

43. GSF and Prognostic Indicator Guidance
Development of a Prognostic Indicator Guidance paper – PIG, in consultation with national leads and organisations
More challenging identifying patients with non-cancer for SC register
Evaluation shows that 60% of practices are including non cancer patients on the GSF registers within 12 months of implementation
20/04/2017

44. GSF - Advance Care Planning
GSF template includes:
Thinking ahead
- open questions
- what matters to pt / carer
- what to do and what not
to do
Proxy - who else involved (LPOA)
Who to call in a crisis
Preferred place of care & death
Other requests eg organ donation / special instructions
20/04/2017

45. ACPs in care Homes
Improved communication with residents and families early on
Improved planning of care
Reduced crises
Helped formalise discussion using a tool
Some gave to families, some senior nurses
DNAR difficult- prefer ‘Allow Natural death’.
Some found they were difficult discussions
All liked having them – useful and clear
20/04/2017

46. Difficulties with ACPs
Bring up the subject
Communication difficulties
Discussing options- ?unrealistic
DNAR discussion
Family tensions
Staff resistance
Updating them
Communicating them
20/04/2017

47. 20/04/2017

48. How do we cascade the information? - GSF Website
800 hits per day
Information on GSF, resources and new developments
Links to the online audit tool
Plan to update for Autumn 07 with protected sections for registered practices, care homes and PCT facilitators/SHA leads
20/04/2017

49. For more information on GSF
National GSF team – Judy Simkins - GSF / GSFCH Administrator
Tel:
GSFCH LEAD Nurse - Nikki Sawkins
Website:
NHS End of Life Care Programme
20/04/2017