1. www.england.nhs.uk West Midlands Strategic Clinical Networks and Senate Welcome to Using Data to Make a Difference.

2. www.england.nhs.uk Thank you for coming, and a big thank you to Public Health England’s Team for jointly hosting and supporting this event. Thank You

3. www.england.nhs.uk Wi-Fi Tweeting - #EoLWM Mobile phones Photography Scheduled breaks Fire alarm Questions Housekeeping

4. www.england.nhs.uk The Strategic Clinical Networks bring together those who use the service with those who provide and commission the service, in order to make improvements in outcomes across patient pathways using an integrated, whole system approach. Strategic Clinical Networks Clinical Senate The Clinical Senate is a source of independent, strategic advice and guidance to commissioners and other stakeholders, to assist them to make the best decisions about healthcare for the populations they represent.

5. www.england.nhs.uk “With over 400 years of NHS experience, we offer unparalleled, independent strategic clinical advice and guidance to commissioners and other stakeholders to assist them in making the best healthcare decisions for the populations they represent”

6. www.england.nhs.uk A new ‘palliative care network’ is being developed by the West Midlands Strategic Clinical Network under the umbrella of the National Palliative Care Network, Chaired by National Clinical Director, Dr Bee Wee. There is currently not enough knowledge to highlight unwarranted variation or recommend best practice models or commissioning for the West Midlands population as a whole. West Midlands Strategic Clinical Network is working with the National Palliative Care Network and national standards to review the ‘state of play’ more locally, alongside key experts and stakeholders. West Midlands Strategic Clinical Network

7. www.england.nhs.uk More Care, Less Pathway (2013)

8. www.england.nhs.uk Care Quality Commission College of Health Care Chaplains Department of Health General Medical Council General Pharmaceutical Council Health and Care Professions Council Health Education England Macmillan Cancer Support Marie Curie Cancer Care Monitor National Institute for Health Research NHS England NHS Improving Quality NHS Trust Development Authority NICE (National Institute for Health and Care Excellence) Nursing and Midwifery Council Public Health England Royal College of GPs Royal College of Nursing Royal College of Physicians Sue Ryder Marie Curie Cancer Care also represented Help the Hospices and the National Council for Palliative Care; Sue Ryder also represented the National Care Forum; Macmillan Cancer Support also represented the Richmond Group of Charities Leadership Alliance for the Care of Dying People (LACDP)

9. www.england.nhs.uk One Chance to Get it Right (2014)

10. www.england.nhs.uk NHS England Five Year Forward View (2014)

11. www.england.nhs.uk Robust information and evidence is required with which to make informed decisions about the commissioning and delivery of palliative care services across the West Midlands; curating or gathering existing data and intelligence to generate a story that highlights population need and variation in provision and outcomes across the geography. It is believed that no-one person, group of people or organisation currently understands the whole story across all conditions, ages and care settings, and as such there is little or no whole system thinking and consideration of services across the West Midlands. End of Life and Palliative Care For People of All Ages

12. www.england.nhs.uk Today is an opportunity for us to think and work together - whether a patient, citizen, clinical expert, leader or commissioner. Today is about considering what data YOU need to help you in your work to improve the care that patients, and those important to them experience. This day is for people who are living with a palliative life-limiting condition, who may also need access to specialist palliative care, and for those who are dying.

13. www.england.nhs.uk “I am very sorry not to be able to join you today, but I am delighted that the West Midlands Strategic Clinical Network is inviting each delegate to make a pledge to help deliver the commitments made in One Chance to Get it Right, and to share good practice amongst yourselves, and with others beyond the network”…more about that later… “It is only by working together with each other, and with the people we serve, that we can get care, and the experience of giving and receiving care, better for everyone involved.” Message from Dr Bee Wee, National Clinical Director

14. www.england.nhs.uk If you would like your details to be included in our growing Palliative Care Database, or chat to one of our team, please get in touch: jaynehurley@nhs.netjaynehurley@nhs.net (Jayne Hurley) lauratooley@nhs.netlauratooley@nhs.net (Laura Tooley) p.wells2@nhs.netp.wells2@nhs.net (Paula Wells) Get Involved

15. www.england.nhs.uk Web www.wmscnsenate.nhs.uk Email richardhancox@nhs.netrichardhancox@nhs.net (Associate Director) russell.booth@nhs.netrussell.booth@nhs.net (Communications Manager) Twitter @WMSCN Contact Us

16. www.england.nhs.uk Dr Sarah Mitchell Clinical Lead West Midlands Strategic Clinical Network Dr Sarah Mitchell 5 th February 2015

17. www.england.nhs.uk “High quality palliative and end-of-life care for all who need it.”

18. www.england.nhs.uk “High quality palliative and end-of-life care for all who need it.”

19. www.england.nhs.uk An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other problems, physical, psychosocial and spiritual. World Health Organisation “Palliative Care”

20. www.england.nhs.uk Patients are defined as ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes: Patients whose death is imminent (expected within a few hours or days) Those with advanced, progressive, incurable conditions, general frailty and co-existing conditions that mean they are expected to die within 12 months Patients with existing conditions if they are at risk of dying from a sudden acute crisis in their condition General Medical Council “End of Life Care”

21. www.england.nhs.uk “High quality palliative and end-of-life care for ALL who need it.”

22. www.england.nhs.uk “All”

23. www.england.nhs.uk “High quality palliative and end-of-life care for all who need it.”

24. www.england.nhs.uk Gold Standards Framework “Right Care, Right place, right time, every time” Actions for End of Life Care NICE Guidelines VOICES “Every Moment Counts” Coalition for Collaborative Care “High Quality”

25. www.england.nhs.uk 5 Priorities for Care IDENTIFYThe possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly. COMMUNICATESensitive communication takes place between staff and the person who is dying and those important to them. INVOLVEThe dying person, and those identified as important to them, are involved in decisions about treatment and care SUPPORTThe people important to the dying person are listened to and their needs are respected PLAN & DOCare is tailored to the individual and delivered with compassion – with an individual care plan in place

26. www.england.nhs.uk One Chance to Get it Right, Priorities and Actions for Care. How are you doing? RED AMBER GREEN Coffee Time Activity

27. www.england.nhs.uk The West Midlands Strategic Clinical Network is inviting YOU to make a pledge to help deliver the commitments made in One Chance to Get it Right, and to share good practice amongst yourselves, and with others beyond the network. Lunchtime Activity

28. www.england.nhs.uk Reading a Local Authority End of Life Care Profile

29. www.england.nhs.uk LA EOLC profiles are available as PDFs and in Instant Atlas 29 Reading a local authority end of life care profile

30. www.england.nhs.uk Indicator notes and definitions are available: 30 Reading a local authority end of life care profile Metadata guide Social care indicators Instant Atlas

31. www.england.nhs.uk Wider context: raising questions These are not performance indicators! The juxtaposition of some indicators may be useful What other relevant information is available - locally? - nationally? 31 Reading a local authority end of life care profile

32. www.england.nhs.uk Presentational Context 32 Reading a local authority end of life care profile

33. www.england.nhs.uk Spine chart structure 33 Reading a local authority end of life care profile

34. www.england.nhs.uk Compared to the average for England, the result is significantly lower similar significantly higher not known (could not be calculated/ unreliable result) Key 34 Reading a local authority end of life care profile

35. www.england.nhs.uk Torbay - highest % population 85+ years (4%; 5,297 deaths) ) 35 Reading a local authority end of life care profile

36. www.england.nhs.uk Torbay - highest % population 85+ years (4%; 5,297 deaths) ) 36 Reading a local authority end of life care profile

37. www.england.nhs.uk Tower Hamlets- lowest % population 65+ 37 Reading a local authority end of life care profile

38. www.england.nhs.uk Blackpool also has an ageing population 38 GML&SC_EOLC_data_20141208

39. www.england.nhs.uk How does population relate to the crude death rate? Torbay Blackpool 39 Reading a local authority end of life care profile

40. www.england.nhs.uk Cause of death Torbay Blackpool 40 Reading a local authority end of life care profile

41. www.england.nhs.uk Place of death Torbay Blackpool 41 Reading a local authority end of life care profile

42. www.england.nhs.uk Is there really any such thing as an average person? Or an average death? 42 GML&SC_EOLC_data_20141208

43. www.england.nhs.uk 1What sources of end of life data do you currently use? (Commissioner/Provider/Other) 2What makes that data useful? (Formats, fields, other…) 3What would improve it? Separate National and NHS Area Team publications

44. www.england.nhs.uk Key 44 Reading a local authority end of life care profile Compared to the average for England, the result is significantly lower similar significantly higher not known (could not be calculated/ unreliable result)

45. www.england.nhs.uk What do you think are the top priorities to improve end of life care planning intelligence? a.Which should be prioritised? b.Who needs to be involved?

46. www.england.nhs.uk What we want from NEoLCIN is…

47. www.england.nhs.uk Progress… Did any results surprise you? What questions do the results for your LA raise? Do these help us/you formulate better questions? What information would you need to answer those questions? How could that information best be presented to assist you in your work? Are we missing some important information that is readily available nationally? Are we a) asking the right questions b) collecting the right intelligence c) presenting the intelligence well ? Does it reflect on and enable us to improve end of life care? 47 Reading a local authority end of life care profile

48. www.england.nhs.uk Thank You