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July 2012 SIMON CHAPMAN DIRECTOR OF POLICY & PARLIAMENTARY AFFAIRS

MAKING END OF LIFE CARE A PRIORITY LOCALLY & NATIONALLY Using Networks Effectively” Merseyside & Cheshire. July 2012 SIMON CHAPMAN DIRECTOR OF POLICY & PARLIAMENTARY AFFAIRS. “Changing the nation’s approach to dying”. Making it a priority for... New commissioners & policymakers

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July 2012 SIMON CHAPMAN DIRECTOR OF POLICY & PARLIAMENTARY AFFAIRS

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  1. MAKING END OF LIFE CARE A PRIORITYLOCALLY & NATIONALLYUsing Networks Effectively”Merseyside & Cheshire July 2012 SIMON CHAPMANDIRECTOR OF POLICY & PARLIAMENTARY AFFAIRS www.dyingmatters.org

  2. “Changing the nation’s approach to dying” • Making it a priority for... • New commissioners & policymakers • Service providers • Health & social care staff • People and communities.... www.dyingmatters.org

  3. www.dyingmatters.org

  4. 2 sections • Influencing the Prime Minister’s Dementia Challenge • What are we (that’s all of us!) doing to influence Health & Well-Being Boards & Clinical Commissioning Groups? www.dyingmatters.org

  5. The Prime Minister’s challenge • “Dementia is one of the biggest challenges we face today – and it is one that we as a society simply cannot afford to ignore any longer” www.dyingmatters.org

  6. 800,000 people in UK have dementia • 1 million by 2012 • 2/3 are women • 1 in 3 people over 65 will die with dementia www.ncpc.org.uk

  7. Dementia & end of life care www.dyingmatters.org

  8. ONS 2010 • 493,242 deaths in England & Wales • 25,106 deaths from Alzheimer’s & dementia • 11% increase from 2009 • 26% increase from 2005 • 18,349 women; 6,757 men • Better awareness & coding/reporting? www.dyingmatters.org

  9. Differences in place of death • Dementia, Alzheimer’s or senility identified as cause or factor on 15% of death certificates (2001-9) • Underlying cause: • 32% died in hospital; 59% in care homes; 8% in own home • Contributory: • 42% in hospital; 47% care homes; 9% own homes • NEoLCIN (2010) www.dyingmatters.org

  10. Early diagnosis AND early planning! • 1 in 3 over 65 die with dementia • 6 in 10 people with dementia go undiagnosed • Only 37% of GPs believe they have received sufficient training to diagnose & manage dementia • 35% of GPs have never initiated a conversation about end of life care www.dyingmatters.org

  11. End of life care, dementia & hospital • 89% of those who die in hospital do so after an emergency admission • 9.4 million bed days by people in last year of life with emergency admission • 86% of all admissions in last year of life are emergency • 89,000 admissions for people with dementia in last year of life. 79,000 were emergencies • VOICES: 43% of hospital nurses always showed dignity & respect for people with dementia www.dyingmatters.org

  12. Prime Minister’s challenge on dementia • Champion groups: • Driving improvements in health & care • Creating dementia-friendly communities that understand how to help • Better research www.ncpc.org.uk

  13. Dementia-friendly communities... • ...that understand how to help • What does that mean? • For our organisation? • Our community? • For each of us? • How can we make it real? WE ARE DEMENTIA FRIENDLY www.dyingmatters.org

  14. What are we (that’s all of us!) doing to influence Health & Well-Being Boards & Clinical Commissioning Groups? www.ncpc.org.uk

  15. REFORM: getting from here... www.dyingmatters.org

  16. ...to here? • People at the centre • Clinical Commissioning Groups • Health & wellbeing boards • NICE quality standard • Integration & collaboration • Co-ordinated services “at any time of day and night” • QIPP • Funding pilots & Dilnot • Outcomes frameworks & Mandate • Public health www.dyingmatters.org

  17. Trends www.ncpc.org.uk

  18. Source: Reversal of the British trends in place of death: Time series analysis 2004-2010 (Cicely Saunders Institute, 19th January 2012) Reproduced with kind permission from the author

  19. Deaths in Usual Place of Residence increasing www.ncpc.org.uk

  20. NHS Commissioning Board Authority • Accountable against 4 objectives: • transferring power to local organisations • • establishing the commissioning landscape • • developing specific commissioning & financial management capabilities • • developing excellent relationships • 2013-14 Mandate in the Autumn www.ncpc.org.uk

  21. NICE Quality Standard • 16 statements on end of life care • No1: identification – all else flows from that • 4 to be accessed “at any time of day and night”: • Physical needs including access to medicine • Consistent co-ordinated care across all services • Urgent care, if crisis • Specialist palliative care www.ncpc.org.uk

  22. Care “at any time of day and night” • Helping people to be cared for where they are • Not “out of hours” • Funding Review recommendation • Access to nursing, specialist advice & symptom control • Anticipatory prescribing • Care co-ordination www.dyingmatters.org

  23. VOICES survey, 2012 • First national survey of bereaved people • Views of Informal carers for the Evaluation of Services • Questionnaire sent to 48,766 people who registered deaths • 1 in 6 of deaths between 1/11/10-30/6/11 • 4-11 months after death • 45.7% response rate (22,292) www.dyingmatters.org

  24. VOICES Quality of care • Excellent/good: • Hospices 92% • District/community nurses 82% • Care homes 81% • Hospital doctors 74% • GPs 72% • Hospital nurses 68% • “Out of hours” 65% www.dyingmatters.org

  25. VOICES Dignity & respect • All of the time: • Hospice doctors 87% • Hospice nurses 80% • District/community nurses 79% • GPs 72% • Care homes 61% • Hospital doctors 57% • Hospital nurses 48% www.dyingmatters.org

  26. VOICESDignity & respect www.dyingmatters.org

  27. VOICESPain relief www.dyingmatters.org

  28. VOICES:Benchmarking

  29. Opportunities & challenges • Who are your local budget holders & decision makers at any given time? • Working with CCGs & HWBs • Informed by people with personal experience • How do you fit into local health & social care? • What needs can you help meet? • Working with new partners • Integrating care • New levers to build capacity in the community www.dyingmatters.org

  30. Some questions for CCGs & HWBs • What is it like to die in your area? • Do you know who the people approaching the end of life and their carers are? • Are they receiving a needs assessment? • Can they access care co-ordinators? • What’s now available for them 24/7? • How are you going to integrate services? • If the answers vary: why? www.dyingmatters.org

  31. Produced by… Endorsed by… www.dyingmatters.org

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