1. www.ncpc.org.ukwww.dyingmatters.org Commissioning for high quality end of life care Dr Dennis Cox MA FRCGP GP & Advisor to Dying Matters Coalition and The National Council for Palliative Care 25 th September 2012

2. www.ncpc.org.uk www.dyingmatters.org

3. www.ncpc.org.uk QUIZ www.dyingmatters.org

4. www.ncpc.org.uk Unplanned admissions People in the last year of life have a)1 b)2 c)3 d)4 e)5 Unplanned admissions to hospital www.dyingmatters.org

5. www.ncpc.org.uk True or False Currently, around 500,000 people die annually in England www.dyingmatters.org

6. www.ncpc.org.uk True or False At any one time, 2% of hospital beds are occupied by dying people www.dyingmatters.org

7. www.ncpc.org.uk True or False Up to 70% of people would prefer to die at home www.dyingmatters.org

8. www.ncpc.org.uk True or False Annually, in England, around 20% of people who die do so in hospital www.dyingmatters.org

9. www.ncpc.org.uk Around what % of a GP’s patients will die in any given year a)2% b)3% c)1% d)0.1% e)0.5% www.dyingmatters.org

10. www.ncpc.org.uk The Case for Change Commissioning Principles for EOLC Examples of successes Ideas to take home www.dyingmatters.org

11. www.ncpc.org.uk Too many inequalities and unmet needs: 457,000 people need good palliative care services every year but around 92,000 people do not receive it (Palliative Care Funding Review 2011) Access is unequal: -83% of people receiving specialist palliative care have cancer. Yet cancer is the underlying cause in less than a third of all deaths. People with CVD most likely to die in hospital. -Disproportionately fewer older people aged 85+ access specialist palliative care than adults aged under 85. -People on low incomes are most likely to die in hospital. www.dyingmatters.org The case for change

12. www.ncpc.org.uk Quality and Fairness Some patients receive excellent care, others do not Hospices have set a gold standard for care, but only deal with a minority of all patients at the end of their lives There is a major mismatch between people’s preferences for where they should die and their actual place of death Only around one third of general public have discussed death and dying with anyone

13. www.ncpc.org.uk Mismatch between people’s preferred place of death and where they actually die: most people would prefer to die at home, but over half die in hospital. The quality of care received varies significantly depending on setting www.dyingmatters.org The case for change

14. www.ncpc.org.uk www.dyingmatters.org There is a slow trend towards more deaths in the community but much further to go Source: Reversal of the British trends in place of death: Time series analysis 2004–2010, Gomes et al Palliat Med Jan 2012

15. www.ncpc.org.uk Demographics Around 455,000 people died in England in 2010, two-thirds of whom were 75 years of age or older. Deaths in England and Wales are expected to rise by 17% from 2012 to 2030. A large proportion of deaths are foreseeable. www.dyingmatters.org

16. www.ncpc.org.uk Population dynamics From pyramid to coffin Parliamentary Office of Science & Technology

17. www.ncpc.org.uk Challenges Public reluctant to discuss end of life care Many professionals do not feel confident to deliver it Services are not available to everyone who needs them, especially on 24/7 basis Long-term care system under strain – Dilnot Commission Lack of data – Palliative Care Funding Review Ageing workforce A context of deficit-reduction www.dyingmatters.org

18. www.ncpc.org.uk Lessons learnt and future issues Growing need and complex challenges Rise in deaths from 2012 Major changes in EOLC needed whatever the scenario CCGs have window of opportunity to plan

19. www.ncpc.org.uk Aspects of Commissioning www.ncpc.org.uk

20. From NICE! Emerging evidence suggests that redesigning local end of life care pathways …..can result in more people being able to die in their usual place of residence …..and is has the potential to be a more efficient and effective use of resources. www.dyingmatters.org

21. www.ncpc.org.uk Efficiency (NICE) commissioning and benchmarking tool demonstrates that a 10% reduction in the number of admissions ending in death could potentially result in a saving of £52million. These savings can be invested in alternative, community-based end of life care services.commissioning and benchmarking tool demonstrates that a 10% reduction in the number of admissions ending in death could potentially result in a saving of £52million. These savings can be invested in alternative, community-based end of life care services. www.dyingmatters.org

22. www.ncpc.org.uk Support for carers and families Information for patients and carers Spiritual care services Step 2 Assessment, care planning and review Agreed care plan and regular review of needs and preferences Assessing needs of carers Step 3 Coordination of care Strategic coordination Coordination of individual patient care Rapid response services Step 4 Delivery of high quality services in different settings High quality care provision in all settings Acute hospitals, community, care homes, hospices, community hospitals, prisons, secure hospitals and hostels Ambulance services Step 5 Care in the last days of life Identification of the dying phase Review of needs and preferences for place of death Support for both patient and carer Recognition of wishes regarding resuscitation and organ donation Step 6 Care after death Recognition that end of life care does not stop at the point of death. Timely verification and certification of death or referral to coroner Care and support of carer and family, including emotional and practical bereavement support Discussions as the end of life approaches Open, honest communication Identifying triggers for discussion Step 1 The End of Life Care Pathway

23. www.ncpc.org.ukwww.dyingmatters.org Commissioning in the new landscape Source: BBC News online Jan 2012 Also: Health & Wellbeing Boards

24. www.ncpc.org.uk Principles of Commissioning Understand Need Procure Services Manage Performance www.dyingmatters.org

25. www.ncpc.org.uk NICE CMG42 Guide for commissioners on end of life care for adults CMG42 includes an interactive commissioning and benchmarking tool www.dyingmatters.org

26. www.ncpc.org.uk EOLC Commissioning Some Principles ‘Commissioners and providers should note that emerging evidence is currently localised and although no single service model exists that all commissioners can simply apply, a range of models can guide service redesign according to local needs and circumstances’. www.dyingmatters.org

27. www.ncpc.org.uk Principle End of life care involves a large number of third sector providers, notably hospices. Host (lead) commissioning may be particularly important These agreements need robust governance arrangements, and if they exist, they should link with existing networks [ 1 ]. www.dyingmatters.org

28. www.ncpc.org.uk ELCQuA End of Life Care Quality Assessment Tool (ELCQuA). ELCQuA is a free online tool for keeping track of progress in delivering end of life care services. www.dyingmatters.org

29. www.ncpc.org.uk www.dyingmatters.org Help is at hand Available at www.endoflifecare-intelligence.org.uk

30. www.ncpc.org.uk Examples Co-ordinate My Care (CMC) – electronic coordination Co-ordination Centre (Nene) Register Building in Primary Care (LES) Dying Matters www.dyingmatters.org

31. www.ncpc.org.uk Proposed Solution New Community EoL Services Care Coordination Centre Rapid Response Service Enhanced (low level) support Discharge Link Nurses

32. www.ncpc.org.uk Northamptonshire Integrated Care Partnership Identified top 5 critical success factors –Reduction in emergency admissions –Reduction in readmissions –Reduction in care home admissions –Reduction in hospital length of stay –Increase in the number of patients supported to die at home Northamptonshire Integrated Care Partnership (NICP)

33. www.ncpc.org.uk Progress to Date: Deaths in Hospitals Deaths in hospital have reduced by 17.6% for the period Apr-Aug 2011 when compared to the same period in 2011 (2501 deaths in 2010, 2061 deaths in 2011)

34. www.ncpc.org.uk Find the 1% Register building in general practice

35. www.ncpc.org.uk

36. Low-cost inventions can make a significant difference www.dyingmatters.org Help is at hand Example: Dying Matters GP pilot project Before intervention 45% GPs rated themselves as unconfident in end of life conversations, at end 94% either “confident” or “very confident”

37. www.ncpc.org.uk Dignity Therapy People want meaning, context and connection for their lives A good death involved physical, social, psychological and spiritual aspects Innovative Work by Irene Higginson and her Department at Kings- script of a person’s life –kind of person, key events, moments how they would like to be remembered www.dyingmatters.org

38. www.ncpc.org.uk Conclusion: Do Something! 1.Leadership and strategy: Each CCG must have a EOLC clinical lead (NCPC) 2.Set up local process/group for strategic discussions (partnership working) 3. GP initiatives: Register Building in General Practice (LES) www.dyingmatters.org

39. www.ncpc.org.uk Conclusion: Do Something! 4. Accelerated learning –generalist workforce – communication and ACP - game changing initiatives 5. Understand need and performance (NICE and EOLC intelligence network) 6. Electronic co-ordination www.dyingmatters.org

40. www.ncpc.org.uk www.dyingmatters.org Thank you www.ncpc.org.uk www.dyingmatters.org