2. Angela Coulter Director of Global Initiatives June 2012 CO-PRODUCING HEALTH CHANGING RELATIONSHIPS

3. CHRONIC DISEASE 36,000,000 people die from non- communicable diseases each year NCDs account for 63% of global deaths More than 90% of these deaths occur in developing countries Most could have been prevented 2011 UN High-level meeting on NCDs 2011 3

4. MANAGING CHRONIC DISEASE Professional care – 5 hours per year Self-care – 8,755 hours per year 4

5. AN UNTAPPED RESOURCE?

6. WHAT WE HAVE LEARNT Traditional paternalistic practice styles……. Create dependency Discourage self-care Ignore preferences Undermine confidence Do not encourage healthy behaviours 6

7. INFORMED, EMPOWERED PATIENTS Have the knowledge, skills and confidence to manage their own health and healthcare, And they…… Make healthy lifestyle choices Make informed and personally relevant decisions about their treatment and care Adhere to treatment regimes Experience fewer adverse events Use less healthcare

8. THROUGH THE PATIENTS EYES Confusing Fragmented Unresponsive

9. DIABETES WEB OF CARE

10. ALZHEIMERS WEB OF CARE

11. WHAT PATIENTS WANT People want co-ordination. Not necessarily (organisational) integration. People want care. Where it comes from is secondary. National Voices 2012

12. Informed, involved patient Productive interactions Prepared, proactive practice team Improved outcomes Delivery System Design Decision Support Clinical Information Systems Self- Management Support HEALTH SYSTEM COMMUNITY Chronic Care Model

13. 13 SHARING EXPERTISE Clinician Diagnosis Disease aetiology Prognosis Treatment options Outcome probabilities Patient Experience of illness Social circumstances Attitude to risk Values Preferences

14. SHARED DECISION MAKING A process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patients informed preferences.

15. KEY COMPONENTS 1.Reliable, balanced, evidence-based information outlining prevention, treatment, or management options, outcomes and uncertainties 2.Decision support with clinician or health coach to clarify options and preferences 3.System for recording, communicating and implementing patients preferences

16. DECISION AIDS: THE EVIDENCE In 86 trials addressing 35 different screening or treatment decisions, use has led to: Greater knowledge More accurate risk perceptions Greater comfort with decisions Greater participation in decision-making Fewer people remaining undecided Fewer patients choosing major surgery Stacey et al. Cochrane Database of Systematic Reviews, 2011

17. SELF-MANAGEMENT SUPPORT

18. YEAR OF CARE: CARE PLANNING 18

19. Engaged, informed patient HCP committed to partnership working Organisational processes Commissioning - The foundation Individuals story Professionals story Share and discuss information Goal Setting Action Knowledge and health beliefs Emotional Behavioural SocialClinical Individuals story Professionals story Share and discuss information Goal Setting Action Individuals story Professionals story Share and discuss information Goal Setting Action Knowledge and health beliefs Knowledge and health beliefs Emotional Behavioural Social Clinical The clinic experience Registration, recall, review, and follow up Access & communication Named contact IT templates Awareness of approach to self- management Consultation skills / competencies Multi-disciplinary team working Knowledge of local options Clinical expertise Structured education/ Information Awareness of process & options Pre-consultation results Access to own records Emotional & psychological support

20. WHAT WORKS? OVERVIEW OF 250 SYSTEMATIC REVIEWS Building health literacy Information and education E-learning and virtual support Telephone helplines Shared decision making Question prompts Health coaching Patient decision aids Communicatio n skills training Self- management support Collaborative care planning Self- management education Simplified dosing and medicines information Home-based self-monitoring Health promotion Opportunistic advice Targeted social marketing Telephone counselling Parenting programmes Mass media campaigns Community development

21. WHAT ARE THE CHALLENGES? Inflexible systems Time/resources Clinical culture

22. WHAT COULD HELP? Clear policy goals Effective clinical leadership, teamwork and training Patient and public engagement in service redesign Integrating decision support and collaborative care planning into clinical pathways Metrics for monitoring process and outcomes

23. FOR MORE INFORMATION …… Open University Press, 2011

24. Shared Haemodialysis Care Martin Wilkie Programme director 26 th June 2012

25. Renal Replacement Therapy (RRT) in the UK There were 49,080 adults receiving RRT in the UK on 31st December 2009 Haemodialysis (HD) in 44% of dialysis patients. Most people receiving centre based HD are passive recipients of care

26. Self-care has been part of dialysis from the beginning and takes several forms Nitsch D et al NDT(2010)

27. Jonkoping, SwedenGuys & St Thomass, Kings Examples of in-centre self-care dialysis

28. Dialysis Practices That Distinguish Facilities with Below- versus Above-Expected Mortality Dialysis facilities with below-expected mortality reported that - – patients in their unit were more activated and engaged, – physician communication and interpersonal relationships were stronger, – dieticians were more resourceful and knowledgeable, and – overall coordination and staff management were superior Clin J Am Soc Nephrol 5: 2024 –2033, 2010.

29. Training in flexible, intensive insulin management to enable dietary freedom in people with type 1 diabetes: dose adjustment for normal eating (DAFNE) randomised controlled trial DAFNE study group BMJ 2002

30. Several interventions are necessary for success

31. Y & H Shared Haemodialysis Care Programme DateEvent May 2010Y&H RSG appoint Home therapies & Self care lead Inspirational Team Inspirational Team development, concept preparation, seeking support from all parties, pilot shared care dialysis work starts in York and Sheffield Oct 2010£400K award from Health Foundation - Closing the Gap Through Changing Relationships Programme £50K award from NHS Kidney Care Jan 2011Set-up phase began Jun 2011Key posts appointed : clinical nurse educators, project manager Course development and piloting Jan 2012Start of implementation phase

32. Y & H Renal Network 6 centres, 19 satellites, 1800 HD patients

33. Observations Infection control Access including needling Prescription management Running dialysis Alarms and safety Setting up and stripping down Waste disposal shared Degrees of shared haemodialysis care Models of haemodialysis care Fully Self Caring Completely Assisted

34. Effectiveness enhanced care interaction Efficiency nurses being involved as problem solvers and trainers Patient at the centre empowered through the experience of self-care Equity access to self-care in the hospital Safety greater patient understanding Timeliness no need to wait for tasks to be done

35. The Shared HD Care Package 1.Training for nurses Nursing journal 2.Training for patients during dialysis 3.Clearly defined competencies 4.Literature to support training Patient hand book documenting progress Patient information leaflet 5.Measures Outcome, process, balancing Staff morale survey

36. % of haemodialysis patients undertaking all aspects of their haemodialysis care % of haemodialysis patients undertaking at least five aspects of their haemodialysis care % of patients who have been asked about participating in shared haemodialysis care % of renal unit staff who have completed the purpose- designed training programme 36 Outcome measures

37. Process Measures % of staff who are enrolled on the training programme % of patients able to establish access (putting needles into their fistula) Yorkshire & the Humber Shared Haemodialysis Care Programme - Measures 37 Balancing Measures % of patients satisfied or very satisfied with their dialysis care [score 5 or above] % of staff satisfied with providing dialysis care [score 5 or above] Staff on training program

38. A call to action for Shared Haemodialysis Care The benefits of greater patient involvement in the management of long term conditions have been demonstrated People on dialysis tell us how much they value having greater involvement in their care With your help, we would like to support centre- based haemodialysis patients to greater self- efficacy ….and provide robust evidence of its value We need a DAFNE for dialysis!

39. Sharing Haemodialysis Care in Sheffield and York Matrons: Melinda Howard & Christine Stubbs Shared Haemodialysis Care Educators: Katy Hancock, Collette Devlin & Tania Barnes

40. Sharing the Haemodialysis Care (SHC) Development of supporting materials!

41. The Patient Information Leaflet 41 Local patient & staff photographs Local contact details on reverse Focus group comprised of a group of patients & staff Distributed in Renal Clinics & HD waiting areas

42. The patient competency handbook Gives a clear idea of what is available for patients to do Eye catching design Easy to use to teach patients Clean, simple & informative

43. SHC Course For Nurses 43 1-1 1 Day Module Course 3 Day Module Course 1 Day Follow up Course (6 months after completion) Disseminated training by staff who have completed 3 day course 1- 2 hour Group sessions 1-1 with Shared Care Educator Future plans for e learning This is part of a 3-tiered approach to training

44. Sharing Haemodialysis Care Course For Nurses A custom built 3 day course incorporating the following: Learning Styles & Teaching practice Research Evidence & Benefits Motivational interviewing The Patient Handbook Patient/Carer Experiences Quality improvement & Auditing Barriers Sustaining Cascading 44

45. The Course Journal... 45 Sent to delegates pre course Self assessment pre course Homework during course All inclusive Sent to delegates pre course Self assessment pre course Homework during course All inclusive

46. Some of the course delegate comments…. 46 The programme has acted as a springboard for development within our unit. I believe this will have a positive benefit for patients I have enjoyed the three sessions and will go back to share and encourage staff/patients with a much greater understanding I have learnt some valuable things about myself as well as patient needs Renewed the existing relationship with my patients & has made it a more positive one No more groundhog day!

47. Barriers and successes…… What have we learned? Key speakers & key topics to maximise learning potential Order & method of delivery Staffing selection to maximise networking opportunities Who to engage first – tiered approach Ongoing support in clinical areas 6 month review & re-engagement with course colleagues 47 Pilot course September 2011

48. What staff and patients are saying? Visit our display area to see: A Letter From A Patient At York A Healthcare Support Workers Account From Sheffield

49. What is it like to participate in Shared Haemodialysis Care? Liz Glidewell, Stephen Boocock, Kelvin Pine; Rebecca Campbell, Shamila Gill and Martin Wilkie on behalf of the Yorkshire and Humber Sharing Haemodialysis Care project team

50. Background 50 Shared haemodialysis care Empowerment Satisfaction Safety

51. What did we do? 51 Doing less Doing more

52. What did we ask about? How do you think about Shared Care? What do you do when you come in for haemodialysis? Why do you do what you do, and how does it affect you? 52

53. 53 What did people talk about? conditions identity resources

54. How do you think about Shared Care? Getting rid/reducing the number of nurses Its taking too long Challenging patient questions Time with patient Doing what meant to be doing - ethos Supporting as a team Shared on good/bad days Assistance when needed No fixed training, relevant to patient Dont want to know anymore Have to do everything Making us go home Health in danger Not for everybody Couldnt put needles in Come and go A separate unit Contributing towards your care Choice as much or as little as you want – no force Educated about treatment and disease Confident and competent Taking back control Why patients are involved Why patients are not involved Why staff are not involved Why staff are involved

55. What do you do now that youre involved in shared haemodialysis? Variability Different approaches for different patients let the patient make decisions Professional development Nurses teaching less experienced staff Healthcare assistants teaching nursing staff Teaching patients Working more closely with others e.g. dieticians and home care Getting to know the patient Patients pace Raise awareness of SHC 55 Not involved? I dont do anything (observations?) Ill try a bit more and thats how it built up Additional involvement Competing to have better outcomes Teaching others Full involvement Home training without going home Going home Patient viewsStaff views

56. Why do you do what you do, and how does it affect you? 56 Knowing whats happening to my body I dont want to go home I want to stop here I want to take control some kind of control back over an illness that takes away so much it gives you a lot of confidence your fistula will last longer cause youre not going into a different hole each time Its a great free feeling I want to be in and out (time) its quite empowering isnt it to be able to you know, sort yourself out the infection rate really decreased confidence teaching staff and patients Appropriate timing (Before, Starting, Day-to-day)

57. How has shared haemodialysis care changed relationships? 57 KnowledgeUnderstandingConfidenceControl Self-esteem and freedom

58. Thank-you for listening Acknowledgements Patients, carers and health care professionals from Yorkshire and the Humber who have contributed enthusiastically to the Shared Care Dialysis programme; the Yorkshire and Humber Renal Strategy Group; the Berkshire Consultancy, and Leeds Institute of Health Sciences. The project is funded by the Health Foundation through the Closing the Gap through changing relationships programme and NHS Kidney Care.