1. electronic Palliative Care Summary (ePCS) SCIMP November 2009 Dr Peter Kiehlmann GP, Aberdeen & National Clinical Lead Palliative Care eHealth peter.kiehlmann@scotland.gsi.gov.uk http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/LivingandDyingWell http://www.ecs.scot.nhs.uk/epcs.html

2. TimescaleBenefits What is ePCS? Why is it needed? Outline Context Journeys

4. The maze of trees

5. 3 Steps in Gold Standards Framework 1. Identify 2. Assess 3. Plan + communicate

6. GSFS - Key Tasks - 7 Cs C1Communication C2Co-ordinator C3Control of Symptoms C4Continuity Out of Hours C5Continued Learning C6Carer Support Cancer Register & Team Meetings, Pt info, Treatment cards, PHR Key Person, Checklist Assessment, body chart, SPC etc Faxed Form Learning about conditions on patients seen Practical, emotional, bereavement, National Carer’s Strategy C7Care in dying phase

7. Reactive patient journey: in last months of life GP and DN ad hoc arrangements & no ACP in place - was PPoC discussed or anticipated? - what is pt/carer understanding of diagnosis /prognosis? Problems of anxiety & symptom control OOH Crisis call - no ACPor drugs available in the home Admitted to and dies in hospital Was Carer supported before/after loved one’s death? Did OOH, PHCT or Hospital reflect on care given? Was use of hospital bed appropriate?

8. GSFS Proactive pt journey: in last months of life On Pall Care Register - reviewed at PHCT meeting (C1) DS1500 and info given to pt + carer (home pack) (C1, C6) Regular support, visits phone calls - proactive (C1, C2) Assessment of symptoms, partnership with SPC - customised care to pt and carer needs (C3) Carer assessed incl psychosocial needs (C3, C6) Preferred Place of Care (PPoC) noted & organised (C1, C2) OOH form sent – care plan & drugs in home (C4) End of Life pathway/LCP/minimum protocol used (C7) Pt dies in their preferred place - bereavement support Staff reflect-SEA, audit gaps improve care, learn (C5, C6)

9. Aims Patient-centred information clearly documented – better, safer experience, in preferred place of care, with fewer crisis admissions Carers - feel supported, informed, involved, acknowledged, empowered Staff – clear instant access to relevant information, increase in confidence, teamwork, communication, job satisfaction “ more time to spend caring for patients & families” A move from Reactive to Anticipatory Care

10. TimescaleBenefits What is ePCS? Why is it needed? Outline Context Journeys

12. Illness trajectories GP will have 20 pts die every year Cancer Dementia and decline A B C Organ failure Sudden death

13. Palliative Care for whom? diagnosis of a progressive or life-limiting illness critical events or significant deterioration during the disease trajectory indicating the need for a change in care and management significant changes in patient or carer ability to ‘cope’ indicating the need for additional support the ‘surprise question’ (clinicians would not be surprised if the patient were to die within the next 12 months) onset of the end of life phase – ‘diagnosing dying’

14. Place of death Scotland 1981-2006

15. So by 2030… if current trends continue home deaths will reduce by 42.3% Less than one in 10 (9.6%) will die at home increase in institutional deaths of 20.3%.

16. Choice-preferred/actual place of death Higginson I (2003) Priorities for End of Life Care in England Wales and Scotland National Council Place: Home Hospital Hospice Care Home Preference 56% 11% 24% 4% Cancer 25% 47% 17% 12% All causes 20% 56% 4% 20%

17. What stops people dying at home? Susan Munroe, Marie Curie Cancer Care and Scott Murray, University of Edinburgh, & Scottish Partnership for Palliative Care 2005 Symptoms Carer Breakdown They don’t know they can They don’t know they are dying Home situation Patient and family wishes Lack of services Admitted by out of hours doctor

18. Policy and Strategies etc- Palliative Care in Scotland

19. Living and Dying Well

20. Assessment and Review of palliative and end of life care needs Planning and delivery of care for patients with palliative and end of life care needs Communication and Coordination Education, training and workforce development Implementation and future developments

22. Activities from Living and Dying Well Board Delivery Plans Triggers and Assessment tools Palliative Care Registers Service Information Directories Community Nursing Care Homes Education champions Anticipatory Rx & Equipment DNA CPR Policy E-Health inc. ePCS 1 st 6month review encouraging

23. TimescaleBenefits What is ePCS? Why is it needed? Outline Context Journeys

24. Why ePCS? Since New GP Contract GPs not responsible 24/7 Many formats sent by GPs - OOH Handwritten Print out of entire Medical Record No consistent format Transcribed by OOH staff Risks to safe, effective patient care

25. ECS New GP Contract GP not responsible 24/7 Risks to safe, effective care Patient info from GP computers -> ECS store twice daily Medication & Allergies 97% of GP Practices >5 million patients Explicit Consent to view ‘Read only’ available to… NHS24, A&E, AMAU, SAS

26. ePCS - What is it? An electronic Palliative Care Summary An extension to Emergency Care Summary (ECS) & Gold Standards Framework Scotland (GSFS) For use both In Hours & OOH ePCS replaces current faxed communications Allows GPs & Nurses to record in one place Diagnosis, Rx, Pt Understanding & Wishes, Anticipatory Care Plans, review dates, lists for meetings

27. Covers 99%+ of population Used by 4500 NHS staff 50,000 accesses per week (3.5million to date) EU-commissioned independent evaluation Benefits found included: patient safety, time saving, faster treatment decisions financial value assigned to costs and benefits, over time…. Emergency Care Summary –benefits

28. ECS –costs & benefits

29. ePCS Overview OOH clinician ePCS display ePCS update 1. During consultation 2. Due to prescription 3. Team meeting or other contact Audit trail ECS Store NHS 24 A&E Ambulance TBD… Practice Admin. Staff GP /DN consultation

30. ePCS Dataset Consent - Palliative care data transfer Carer details and key professionals Diagnosis – as agreed by patient by pt & GP Current Rx –Rpt, 30/7 Acute, Allergies; Patient wishes Preferred Place of Care [PPoC] ) DNA CPR decision ) Anticipatory Patient’s & Carer’s understanding of ) Care diagnosis/prognosis ) Plan Just in Case – Rx & equipment ) Advice for OOH care ) GP Mobile no., death expected? Cert. etc )

31. EMIS - Summary

32. ePCS no diagnosis added yet

33. Diagnosis agreed with pt & added

34. Patient/Carer Wishes

36. New ECS build screenshots Access to PCS Information

37. Base ePCS –view in Adastra

38. Mobile ePCS - Adastra

39. Using ePCS in practice – a continuing process Does this pt have Palliative Care Needs? Does this pt have Palliative Care Needs? Add to Pall Care Register, Add to Pall Care Register, Once Consents to send ePCS ->OOH, Once Consents to send ePCS ->OOH, agree Medical History, set review date agree Medical History, set review date Once consented any new info goes automatically Once consented any new info goes automatically Not expected to complete in one go! Not expected to complete in one go! Complete pt wishes and Understanding, DNA CPR, record “Just in case” Rx and Equipment as appropriate Complete pt wishes and Understanding, DNA CPR, record “Just in case” Rx and Equipment as appropriate Regular review at PHCT Regular review at PHCT Keep updating! Keep updating!

40. TimescaleBenefits What is ePCS? Why is it needed? Outline Context Journeys

41. Palliative Care DES (1 of 26!) 1. Put pt on Palliative Care Register Clinical, Pt choice, Surprise Question From Prognostic Indicator Guidance 2. Make Anticipatory Care Plan – as ePCS 3. Send OOH form/ePCS within 2w 4. When dying use LCP /locally agreed pathway Aim- encourage anticipatory care, for all diagnoses

42. When will it be available? Pilots completed Aug 09 EMIS, Vision – Grampian, Gpass – A&A, Lothian Issues addressed included acceptability & ease of use, improving the consultation & communication, anticipatory care planning, NHS Lothian Rollout Sep 09 Vision more user-friendly late 09 Evaluation, national rollout late 09 Link with Board Leads for timings GP,Palliative Care, eHealth,OOH

43. ePCS – Benefits Natural progression from GSFS & ECS Fits into day to day work of GPs & DNs Aims to identify patients “upstream” ie last 6-12 months, not just last days/weeks Encourages Anticipatory Care Planning Prompts to remind to ask about “difficult” issues “Just in Case”, DNA CPR, PPoC Shares critical info. on vulnerable patients at important times. OOH & Secondary Care say it transforms care Patients & carers reassured Safer, better experience

45. ePCS Overview OOH clinician ePCS display ePCS update 1. During consultation 2. Due to prescription 3. Team meeting or other contact Audit trail ECS Store NHS 24 A&E Ambulance TBD… Practice Admin. Staff GP /DN consultation