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

Project Progression Phase 1 Phase 2 Phase 3 Set Up April- June 2009 March 2009 Detailed project plan Introduction to Marie Curie Toolkit Stakeholder Briefings Phase 1 April- June 2009 June-August 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. Forward detailed project plan with the minutes 2

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

Work Programmes Communi-cation Primary Care Bereavement District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Bereavement Communi-cation Raising Public Awareness Primary Care Access to Equipment Pharmacy Ambulance Service Weekend Admissionto Hospices RACE Specialist Palliative Care Renal Pathway

Work Programmes Communi-cation Primary Care Bereave-ment District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Bereave-ment Communi-cation Raising Public Awareness Primary Care Access to Equipment Pharmacy Ambulance Service Weekend Admissionto Hospices RACE Specialist Palliative Care Renal Pathway

Work Programmes Communi-cation Primary Care Bereave-ment District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Bereave-ment Communi-cation Raising Public Awareness Primary Care Access to Equipment Pharmacy Ambulance Service Weekend Admissionto Hospices RACE Specialist Palliative Care Renal Pathway

Work Programmes Communi-cation Primary Care Bereave-ment District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Bereave-ment Communi-cation Raising Public Awareness Primary Care Access to Equipment Pharmacy Ambulance Service Weekend Admission to Hospices RACE Specialist Palliative Care Renal Pathway

Work Programmes Communi-cation Primary Care Bereave-ment District Nurse Service Out of hours Care Acute Care Nursing & Care Homes Bereave-ment Communi-cation Raising Public Awareness Primary Care Access to Equipment Pharmacy Ambulance Service Weekend Admissionto Hospices RACE Specialist Palliative Care Renal Pathway

Primary Care local Enhanced Service Enhanced GSF primary care meetings ‘Just in case’ boxes Lead GPs to attend annual study day GSF Surprise Question in Care Homes Education for all GP’s Out of Hours Forms

The Impact of Our Work

The Impact of Our Work

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

South Worcestershire CCG RAG ratings 11/12 Practice Name   PCT Practice Population (Q3) Education Modules OOH % GSF? % 2 13527 81 3 19955 68 85 14888 53 83 4083 Audit 12813 25 65 13952 6 64 7272 16 92 6352 10352 89 79 11606 69 71 11005 93 10601 78 56 7519 47 10034 90 8412 9902 39 63 10767 58 1 13794 6765 27 91 10089 52 10145 77 51 5523 50 4215 80 11532 7085 14 3389 6010 9792 17 South Worcestershire CCG RAG ratings 11/12

Wyre Forest CCG RAG ratings 11/12

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

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 Other options just in case box, referral to specialist palliative care etc.

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

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.

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

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

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

Using the evidence- Causes of death 23

Trajectories of Death

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?’ ( if you went into your GP surgery and told you were dying.. Formal no further treatment options

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

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

Whole systems redesign: Working with our Acute Trust 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

AMBER = Action Assessment Management Best Practice Engagement Recovery uncertain

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

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?”

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.

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

Specialist Palliative care Innovation & new ways of working: roll out of learning Acute Trust Routes to Success E-elca/comms skills AMBER Care Bundle Discharge Liaison Specialist Palliative care VOICES/LCP RTS accepted by trust board : Key enablers LCP Electronic palliative care coordination system AMBER care bundle Rapid discharge VOICES EELCA 36

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

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

IT Systems

IT Systems

IT Systems

IT Systems

IT Systems

IT Systems

Summary of Success 17% decrease in acute admissions which end in death to date Reduced acute hospital costs in excess of £2.9 million to date. 150 High impact ambassadors in our community provider for EOL care Significantly more people dying in their chosen place of care.

Thank you!