1. Delivering excellent person centred end of life care for all Amanda Rolland National End of Life Care Programme East Midlands EoLC Summit 22 November 2012

2. Recent history – where were we? Nearly 60% of people died in hospital Projections suggested that by 2030 less than 10% of people would die at home Palliative and end of life care focussed mainly on cancer patients and hospices Mortality data was the only routine source of information for EoLC

3. As a result of the UK’s aging population, the number of deaths per year is expected to rise by 17% between 2012 and 2030 Many more people will be dying at an older age and therefore more likely to have complex needs and multiple co-morbidities as they near the end of their lives. To deliver quality care effectively requires a shared vision for end of life care to encourage commissioners and providers to work together. The facts  1% of the population die each year  450,000 deaths 1 death per min The impact on services of the demographic time bomb needs to be addressed as a priority:

4. 4 whose business is it? End of Life Care Strategy A step change in the quality of care for people approaching the end of life To enhance choice at the end of life To reduce inequalities (e.g. geographical and cancer vs. non-cancer) To prepare for the future demographic challenge: increasing numbers of deaths, particularly amongst people over 85 years To raise the profile of end of life care amongst health and social care staff and the public

5. National Improvement charts on DIUPR- from: End of Life Care Strategy: fourth annual report. DH. October 2012

6. Regional Improvement 6 charts on DIUPR- from: End of Life Care Strategy: fourth annual report. DH. October 2012

7. Person centred /family care 1. Engage individuals and families as active partners in care 2. Open transparent communication that is respectful of preferred priorities for care and preferred place of death 3. Involve families in the physical care of their relatives 4. Involve families in improvement teams 5. Facilitate user feedback within service improvement 6. Care after death Leadership 1. Leadership explicit with organisation’s agenda 2. Part of senior management objectives 3. Clinical and social care champions for end of life care as well as facilitators networks 4. Competent trained staff – partnerships between hospital palliative care teams/hospices with long term conditions, primary care, OOHs, social care/domiciliary and care home staff e.g. e-ELCA 5. Change of culture towards eolc by staff caring for individuals approaching end of life Effective Teamwork 1. Agreed standards for effective communication with individual and family 2. Effective identification and development of management/care plans across sectors 3. Discharge liaison/Community/GPs/Ambulance/OOH/Social Care 4. Adopt common end of life care Pathway language – e.g. use of RtS and other eolc resources Safe, effective, reliable systems 1. Implement end of life care good practice models – productive series, advancing quality, clinical audit, ELCQuA, NEoLCIN profiles, Social care TEST 2. Use of agreed prognostic indicator guidance 3. AMBER Care Bundle in use across Acute Trust 4. Advance care planning, Preferred Priorities for Care, Do Not Attempt Cardio-Pulmonary Resuscitation, Liverpool Care Pathway, GSF, Disease specific frameworks, RtS, etc 5. Electronic palliative care co-ordination system (EPaCCS), rapid discharge home to die pathway 6. Symptom management Measurement 1. Safe and effective care with regular review of Serious Untoward Incidents, complaints etc 2. PROMS 3. National bereavement survey (VOICES) 4. The route to success acute dashboard – each trust to develop own utilising ‘how to’ guide metrics for wards and boards 5. Real Time Survey results Delivering excellence in EoLC Our drivers, outcomes and enablers Care that is compassionate, equitable, reliable, improves the care experience, makes the best use of resources Full compliance with national policy, Outcomes Framework, NICE Quality Standard and COF, CQC regulations Reduction of harm Policy – Existing and New EoLC Strategy – 6 years to run Operating Framework 2011/2012, 2012/2013 Our NHS Care Objective – draft mandate (2012 focus on interdependent health care outcomes through integrated care Caring for our future WP 2012 – Palliative Care Funding Review NICE EoLC Quality Standards and Commissioning Outcomes Framework VOICES survey 2012 - in relation to overall quality of eolc in the last three months of life a difference of nearly 20% was observed between the highest and lowest PCT cluster (51% to 32%) - differences between patient groups and between care settings were also evident. A traffic light system used for benchmarking highest and lowest 20% will be used to measure progress on improving eolc at national and local levels. Drivers Outcomes Enablers

8. VOICES First ever national survey of bereaved relatives 22,292 questionnaires returned 46% return rate Data valid to PCT cluster level Published July 2012 Second survey commissioned Data to support an Indicator in the NHS Outcomes Framework

9. VOICES Overall quality of care in the last three months of life was rated as −Outstanding or excellent 43% −Good 33% −Fair 14% −Poor 10% “It is good some of these questions are being asked.” “I am really passionate that lessons are learnt.”

10. VOICES PCT Cluster benchmarking

11. End of life care strategy 2008 Key elements: Raising awareness of death and dying Integrated service delivery Workforce, measurement, research, funding, national support. policy Societal level Individual level Infrastructure

12. Supporting people to live an die well is everybody’s business 22 Be confident be brave, initiate a conversation

13. EPaCCS Strategic Benefits

14. Partnership working – making it happen

15. End of life care - Passing on the baton… The new Improvement Body Health and Well-being Boards CCGs/LAs Public Health England NHS Commissioning Board, EoLC within Domain 2 under Martin McShane

16. And finally…… Remember….. its about real people

17. Contact us: Website: www.endoflifecareforadults.nhs.uk Email: information@eolc.nhs.uk Telephone: 0116 222 5103 National End of Life Care Intelligence Network www.endoflifecare-intelligence.org.uk NEoLC Programme newsletter