1. End of Life Care Pathway in Worcestershire Dr Felix Blaine- Clinical Champion Debbie Westwood – programme Lead

2. Project Progression Set Up March 2009Detailed project plan Introduction to Marie Curie Toolkit Stakeholder Briefings Phase 1 April- June 2009 June- August 2009 Gathering and analysis of epidemiological data Questionnaires/focus groups for all stakeholders services and organisations. Over 300 patients clinical staff and manages questioned. Analysis, write up recommendations, proposed work streams. Presented to Network end July. Funding allocations agreed by End of Life executive. Plans Submitted to SHA Phase 2 August 2009- onwards Began working with providers to develop operational proposals/service specifications etc. October 2009 first part of EoL Les launched. Phase 3 November 2009-present Set up services, implement, monitor and evaluate to ensure outcomes are achieved.

3. We listened to what they had to say… Over 50 patients carers 1:1 interviews focus groups told us what they wanted and where the gaps were in the EOL pathway. Hospice carers groups GP patient groups VOICES questionnaire (adapted locally) CQUIN to support its use in provider organisations Marie curie Worcestershire association of carers Worcestershire Patients panel (preferred place of care – home) Patients and Carers voice

4. District Nurse Service District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Nursing & Care Homes Bereaveme nt Commu ni- cation Raising Public Awarene ss Raising Public Awarene ss Primary Care Access to Equipme nt Pharma cy Ambulan ce Service Ambulan ce Service Weekend Admissionto Hospices RACE Specialist Palliative Care Specialist Palliative Care Renal Pathway Work Programmes

5. District Nurse Service District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Nursing & Care Homes Bereave- ment Commun i-cation Raising Public Awareness Raising Public Awareness Primary Care Access to Equipment Pharmac y Ambulanc e Service Ambulanc e Service Weekend Admissionto Hospices RACE Specialist Palliative Care Specialist Palliative Care Renal Pathway Work Programmes

6. District Nurse Service District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Nursing & Care Homes Bereave- ment Commu ni- cation Raising Public Awarenes s Raising Public Awarenes s Primary Care Access to Equipmen t Pharma cy Ambulan ce Service Ambulan ce Service Weekend Admissionto Hospices RACE Specialist Palliative Care Specialist Palliative Care Renal Pathway Work Programmes

7. District Nurse Service District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Nursing & Care Homes Bereave- ment Commu ni- cation Raising Public Awarene ss Raising Public Awarene ss Primar y Care Access to Equipme nt Pharma cy Ambulan ce Service Ambulan ce Service Weekend Admission to Hospices RACE Specialist Palliative Care Specialist Palliative Care Renal Pathway Work Programmes

8. District Nurse Service District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Nursing & Care Homes Bereave- ment Commu ni-cation Raising Public Awarenes s Raising Public Awarenes s Primary Care Access to Equipmen t Pharmac y Ambulanc e Service Ambulanc e Service Weekend Admissionto Hospices RACE Specialist Palliative Care Specialist Palliative Care Renal Pathway Work Programmes

9. Primary Care local Enhanced Service Enhanced GSF primary care meetings‘Just in case’ boxesLead GPs to attend annual study dayGSF Surprise Question in Care HomesEducation for all GP’sOut of Hours Forms

10. The Impact of Our Work

12. Analysis of place of deaths for all deaths and deaths on the palliative care register for 2011/12. Total number of deaths on palliative care register n=1800 total deaths n= 4000

14. Practice Name PCT Practice Population (Q3) Education ModulesOOH %GSF? % 213527 281 319955 6885 314888 5383 24083 3Audit 212813 2565 213952 664 27272 1692 26352 640 310352 8979 311606 6971 311005 9365 310601 7856 27519 4783 310034 9085 28412 560 29902 3963 210767 580 113794 20 26765 2791 310089 5279 210145 7751 25523 9150 24215 6880 311532 5880 17085 140 23389 0Audit 16010 00 29792 1781 South Worcestershire CCG RAG ratings 11/12

15. Wyre Forest CCG RAG ratings 11/12

16. Case Study 1 99 year old lady living in a lovely residential home for 8 years Heart failure and breathless Possible underlying diagnosis of Pulmonary fibrosis

17. Practical Planning Discussion with the patient or relative Discussion with the home DNAR decision Advanced Care planning - Symptomatic treatment only - A ceiling on treatment - Full treatment options (palliative care register, just in case box) Communicate the plan

18. OOH Care Bimonthly reviews of cases Set KPI’s Training module developed Feedback to primary care and Ooh from reviews Information fed into study days and two modules for all GP’s

19. Case Study 2 Case 2 68 year old man with MND wanted to die at home, main fear was choking to death. Had an OOH form, DNAR, Just in case box. OOH form read ‘patient has motor neurone disease, patient unable to speak and uses a text machine (iPad) to communicate increasing weakness in limbs.

20. Case Study 3 86 year old gentleman with bowel cancer wanting to die in his residential home. OOH form. No Just in case box

21. Care Homes The National Audit Office report on End of Life Care (Nov 2008).

22. Care Homes GSF GSF surprise question Rolling programme of education Nursing home support nurses Average life expectancy on entering a care home< 1 year

23. Using the evidence- Causes of death

24. Trajectories of Death

25. Why is non cancer so difficult? Patient Expectations Lack of Consultant decision making Holistic support Recognised disease trajectory ‘How do you tell someone they are dying in a busy cardiology clinic in a 10 minute appointment when youare running late?’

26. Innovation and new ways of working: The renal clinic When we started: No clear pathway for patient support All died in the acute trust At the end of the first year: 27 patients with a mean age of 84 90% died in the community Multidisciplinary support Carers support and gentle advance care planning

27. Innovation & new ways of working: Evaluation of the renal clinic

28. 2012/13 Amber care bundle in 12 wards- more to follow. Use by Health and care trust in community hospitals. One of the first to pilot in the community. Recognised nationally Whole systems redesign: Working with our Acute Trust

29. AMBER = Action Assessment Management Best Practice Engagement Recovery uncertain

30. AMBER = ACTION (DAY 1) Identification questions: is patient AMBER? Is the patient rapidly deteriorating, clinically unstable, and with limited reversibility? Is the patient at risk of dying within the next 1-2 months? No Yes If YES to both questions proceed to implementation of the AMBER care bundle

32. What it means to ward staff Day one – Identification and initiation AMBER follow-up A – “Is patient still AMBER?” C – “Has medical plan changed?” T – Touch base with carers – Is everything OK?”

33. Whole system redesign: Amber results 335 patients supported in the last 12 months. 100 patients audited, all had appropriate plans in place and an opportunity to talk about their wishes at the end of life. 50 who died in the acute trust had chosen to or it was clinically appropriate Of the 50 who died within 100 days of discharge only 1 was readmitted.

35. Innovation & new ways of working: roll out of learning Renal Respiratory Frail Elderly Parkinsons / Elderly Neurology Cardiology Non cancer clinics

36. Routes to Success E-elca/comms skills AMBER Care Bundle Discharge Liaison Specialist Palliative care VOICES/LCP Innovation & new ways of working: roll out of learning

37. Bereavement Pathway Comprehensive carer support pathway Community of organisations Volunteer support Innovation & new ways of working: roll out of learning

38. Advance Care Planning Public Health Campaign Electronic Palliative Care Coordination systems Workforce development e.g. ambulance Innovation & new ways of working: roll out of learning

39. IT Systems

45. Summary of Success

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