1. End of Life Care- An Integrated approach to service delivery

2. Programme Delivering Choice Programme – Simon Gordon, Senior Project Manager, Marie Curie Cancer Care Palliative Care Coordination Centre – Karen Torley, Regional Manager, Marie Curie Cancer Care Nursing Service Community Palliative Care Services – Julie Newby, Palliative Care Manager, STFT GP palliative care register – Lesley Davie, Project Manager, NECN Deciding Right – Sarah Rushbrooke, Network Quality and Patient Safety Director, NECN Future priorities – Dr Sarah Louden, End of Life Lead, Gateshead Clinical Commissioning Group

3. Gateshead population (2010/11) 191,000

4. 1, 953 Total deaths

5. 1,233 Hospital deaths (63.1%) 405 Home deaths (20.7%) 64 Hospice deaths (3.3%) 224 Nursing/Residential home deaths (11.5%) 27 Other (1.4%)

7. Marie Curie Delivering Choice Programme Northumberland Tyne and Wear

8. Choice in place of care and death Major gap between preference and what actually happens Given the choice, more than 60% of us would prefer to be cared for and to die at home if we were terminally ill, surrounded by family and friends Just 4% of us would choose to die in hospital “If I could wave a magic wand, I would just go home.”

9. Marie Curie Delivering Choice Programme Our vision Together, we will develop and provide the best possible services for palliative care patients, allowing them to be cared for in the place of their choice.

10. Programme objectives Working in partnership with the NHS, social services, and the voluntary sector, we aim to provide: 1)Patient-focused 24-hour service models that serve local needs and ensure: –The best possible care for palliative care patients –Choice in place of care and death is available to all –Improved equity of access to services –Appropriate support services to palliative care patients and their carers –Information on choice is available and known to all –Improved co-ordination of care among stakeholders

11. Programme objectives 2) Independent evaluation of the economic impact to healthcare services of more patients receiving palliative care at home as compared with hospitals 3) Dissemination of findings to other health and social care providers leading to the replication of solutions across the UK

12. Northumberland Tyne and Wear Phase 1 - 2009 Distributed 2,400 questionnaires to various professional groups Set up 25 focus groups with carers and professionals including community matrons, District Nurses and home care nurses Interviewed over 140 staff across services in hospitals, hospices, ambulance providers and social care Shadowed Out of Hours District Nurses and hospital-based social workers Observed patient case studies through admission and discharge audits Reviewed demographic, epidemiological and service utilisation data Reviewed operational documentation of services Listened to the experiences of 43 patients who are using palliative care services

13. Northumberland Tyne and Wear Phase 2 - 2009 onwards Following the Phase I investigation, a series of workstreams were proposed to improve palliative care services in the project area. At the Project Executive Committee meeting of 8th October 2009, the following work streams were approved for progression to Phase II: Workstream 1 Primary Care and Community Services- The development of consistent 24 hour are accessible, responsive and coordinated –Workstream to be taken forward with two separate working groups for North and South of Tyne Workstream 2 Acute Care- Managing palliative care pathways Workstream 3 Appropriate transportation for patients with palliative care needs Workstream 4 Carer Support Workstream 5 The development of appropriate systems that allow communication across all providers

14. South of Tyne and Wear

15. Contact Details Simon Gordon Senior Project Manager Marie Curie Cancer Care Tel: 0191 219 1042 Mob: 0782 4837 384 Email: simon.gordon@mariecurie.org.uksimon.gordon@mariecurie.org.uk http://deliveringchoice.mariecurie.org.uk

17. South of Tyne and Wear Palliative Care Coordination Centre

18. Aims Improve the co-ordination and provision of packages of care for patients at the end of life and their families. Enable people to be cared for and to die in the place of their choice. Facilitate effective use of resources and provide management information on service utilisation. Maintain a locality palliative care register.

19. Key Daily Tasks Receive fax or telephone referrals from DN’s and other healthcare professionals Communicate patient care needs to appropriate care providers Consult with care providers to co-ordinate packages of care. Facilitate ordering of equipment. Communicate care bookings to all appropriate healthcare professionals and patients. Modify care packages as necessary and communicate changes when they are received. Maintain and update palliative care register. Signposting facility for “inappropriate calls”.

20. Overview of Centre 1 Coordination Centre Manager supported by 5 Palliative Care Coordinator Administrators Based at Marie Curie Hospice, Newcastle Hours of service: 8am - 6pm Monday-Friday 10am - 3pm Saturday-Sunday Bespoke telephony and IT systems

21. How will the centre benefit local users? Reduce the amount of time spent by clinical staff organising packages of care, allowing time to be reinvested into the delivery of clinical care Improve the organisation of care through a coordinated approach. Provide support in the booking of care packages to all professional groups Promote integrated working across health and social care professionals Holding and maintaining a palliative care register for South of Tyne and Wear

22. Outcomes for Commissioners Function of PCCC  Response time and prioritisation  Key patient data collection  User feedback Outcomes for patients  Patient and carer preferred place of care  Single point of contact

24. Gateshead and South Tyneside Out of Hours Specialist Palliative care Team Commencing April 2 nd 2012 Julie Newby Feb 2012

25. The Sunderland Model Population 297,000 “Legacy of our post Industrial and Mining Economy” High levels of: CA HF Alcohol consumption Smoking and obesity Social depravation Unemployment Early Mortality Gateshead 210,000 South Tyneside 150,000

26. Sunderland Overnight Palliative Care Team commenced 9th February 1998 Awarded Beacon Status 1999 Cited in the National Cancer Plan(2000) as a model of excellence for the development of overnight Palliative care services. The Past

27. The Aim ‘To enable people to be cared for/die in the place of their choice’

28. Drivers for Change Locally – The team struggling to meet demand NICE Palliative and Supportive Care Guidelines (2004) EOL Strategy(2008) Palliative Care for all life limiting diseases ACP/PPC Demographics and Cost

29. The Present October 2008 the OOH specialist palliative care team now works from 4pm-9.15am every evening and night Two trained nurses are on duty each evening and night providing direct planned care in patients homes, residential/nursing homes and responding to crisis calls as well as telephone triage/advice/ Support Provide advice/support to staff and patients in hospital/hospice

30. Aims of the Service Provide a service which enables patients with cancer or other life limiting conditions to be cared for/die in the place of their choice. Facilitate rapid discharge from hospital/hospice both in and out of hours. Offer a planned visit following discharge from hospice/hospital. Provide a co-ordinated and flexible/seamless service to meet the patient/carers needs over the 24 hours period.

31. Referrals DN GP Primecare (OOH Deputising Service) UCT/24/7 Community Matrons Hospice Paramedics Local acute trust. A&E Specialist PC nurses (community/hospital) PC Consultants Marie Curie Telecare/wardens Patient/carer

32. Source of Referrals

33. Current Activity Average - 43 new patients per month Average - 100 patients per month on caseload Average - 90% of patients on OOH team caseload die at home 93% achieve PPC ( where hospice is nominated )

34. Modal duration on caseload 50% 23% 27% 2-14 days less than 1 day 30 days to over 1 year

35. Type of Visit

37. Place of Death

38. The QIPP Agenda

39. Quality 99.3% of Crisis Visits enabled the patient to remain at home (April 1st 2011-January 31 st 2012)

40. Quality Crisis Visits Seen Within 1 hour (April 2010-March2011)

41. Quality Planned visits seen within 30 minutes of appointment (April 2010-March 2011)

42. Quality Patient and satisfaction survey reports Compliment/ letters/ cards Patient and carer stories (independently audited) Close MDT patient centred working relationships Team - low sickness rates - low staff turnover - ease of recruitment 1 complaint in over 14 years Excellent working relationships with deputising doctor service Excellent working relationships with GPs and DNs

43. Innovation 1998-First dedicated OOH Palliative Care Service in UK 1999-National Beacon Award 2000-cited in National cancer Plan as model of excellence 2001-Established small committed consortium of pharmacists to access drugs OOH 2003-commenced verification of death by nurse in the community 2004-developed and commenced use of PGDs for PC pts in community 2008-Marie Curie, Delivering Choice Programme 2009-won Nursing Standard ‘Innovation in Palliative Care award’ 2011-outcome of Marie Curie Delivering Choice project and workforce development 2012-Won tender to develop OOH service for South Tyneside and Gateshead.

44. Productivity Continuously Increasing numbers of: patient’s dying at home averted admissions referrals rapid discharges patients achieving PPC patient’s dying on LCP Increased utilisation of service for all life limiting diseases

45. Prevention of: unnecessary futile admissions re-admission protracted length of stay in hospital waste of NHS resources: - reduced ambulance call out, - reduced deputising doctor call out (use of PGD and verification of death) Complaints

46. The Future Capacity issues and investment Preventing avoidable admissions Weekends and BH daytime 24/7 model? Offering patients/carers real choice – PPC The wider needs of the locality Equity of access to services Saving money for NHS Win, Win!

47. The Future ‘Invest to Save’ Sunderland has 14 years experience to demonstrate that our model of OOH PC: keeps dying patients at home vastly reduces stress for patients and carers prevents avoidable and largely futile hospital admissions. In terms of prevention of admission and facilitation of rapid discharge for every £1spent, £1.65 can be saved

48. JULIE NEWBY Palliative Care Team Manger Out of Hours St. Benedict’s Hospice Sunderland 0191 5410055 07876654083julie.newby@sotw.nhs.uk

50. North of England Cancer Network GP Palliative Care Register Project Lesley Davie, Project Manager Your register, their palliative care

51. Rationale Wide variation in the use of palliative care registers and in advance care planning Poorer co-ordination of care for people at the end of their life. National Primary Care Audit in End of Life Care (2009): Patients on a palliative care register receive better co-ordinated care Earlier identification of patients (cancer and non cancer) will lead to improved end of life care

52. Project Baseline Data Findings 59% of practices had 20 or less patients on their register 42% added patients to the register 12 months before death 62% of GPs and 18% of administrative staff were responsible for adding patients onto the register 64% discuss palliative care patients monthly

53. Resources Help and guidance is now available: The ‘How to’ Guide will give primary care teams help to achieve a gold standard of palliative care planning The Palliative care template for EMIS LV and SystmOne practice systems

54. Finally, We need your support to implement the ‘How to’ Guide and templates in as many GP practices as possible And now ‘Deciding Right’

55. Deciding Right Sarah Rushbrooke Network Quality & Patient Safety Director North of England Cancer Network March 2012

56. ‘Deciding Right’ Deciding right - a new north east initiative integrated approach for making care decisions in advance with children, young people and adults

57. Why develop this initiative? The challenges of planning future care The changing picture of clinical decisions from organisational policy-driven decisions to patient-centred shared decisions The need to embed existing legislation and guidelines into clinical practice, e.g. the Mental Capacity Act The desire to create region-wide documentation for use in any setting (hospital, hospice, community transport) The need to ensuring clarity, flexibility and choice To understand the limitations of advance care planning Enable policy dissemination

58. Advance Care Planning ACP There continues to be widespread confusion over definition – what is an advanced care plan? It is now firmly linked to the Mental Capacity Act ACP is not the same as general care planning ACP can only be made by people with capacity Only applies when a future loss of capacity is anticipated There are only three written outcomes of ACP: - advance statement - Advance Decisions to Refuse Treatment (ADRT) - Lasting Power of Attorney

59. Advance Decision to Refuse Treatment (ADRT) Regional ADRT policy Governed by the Mental Capacity Act It can only be made by someone with capacity to make that decision ADRT only becomes active when the person’s capacity is lost ADRT can be verbal in some decisions, but must be written if the person is refusing life-sustaining treatment If valid and applicable, an ADRT is legally binding Not the answer to immediate care decisions – future planning A regional ADRT form now exists within ‘Deciding Right’

60. Cardiopulmonary resuscitation (CPR) decisions Based on 2007 BMA/RC/RCN Joint Statement It identifies the triggers for making CPR decisions Creates a single DNACPR form for use in all settings (hospital, hospice, community, transport) Recognises the Liverpool Care Pathway for the Dying Patient document as a DNACPR order/default

62. Issues/Concerns with Embedding it into practice Chief Executive Sign up has been agreed by Trust & PCTs. All other organisations across the SHA endorse the principles. Training issues are emerging – local champions, agree a training strategy Launch to the profession - 14 th March at Palliative care Congress Launch to the public - Spring How to make available to all providers of care – who will host documentation/forms/printing costs What is the role of IT services & systems? How do we ensure that all people on the LCP are DNACPR? End of Life CIT and Network SPC group to agree a way forward.

63. Thank You Sarah Rushbrooke Deciding right is now online on www.theclinicalnetwork.org http://www.theclinicalnetwork.org/end-of-life-care---the-clinical-network/decidingright www.cancernorth.nhs.uk