Valuing Individuals -Transforming Participation in Chronic Kidney Disease

1. Valuing Individuals -Transforming Participation in Chronic Kidney Disease

2. https://www.thinkkidneys.nhs.uk/ckd/

3. Context for TP-CKD Programme NHS England is required by the NHS Mandate ‘to involve patients and their carers, and empower them to manage and make decisions about their own care and treatment’ ‘enhance quality of life for people with long term conditions’ and ‘embrace opportunities created by technology’ All people with a long term condition to have a personalised care plan by 2020 | 3 Transforming Participation in Chronic Kidney Disease Rachel Gair

4. NHS England | 4 Transforming Participation in Chronic Kidney Disease Rachel Gair

5. Person Centred care – co-producing health | 5 Transforming Participation in Chronic Kidney Disease Rachel Gair

6. Why person centred care? • UK health services face big challenges • population increasing in size and age • people living longer with multiple conditions • severe financial constraints • Person centred care can help to improve outcomes and reduce burden • How can we work in partnership to support people when they are not in contact with the service? • Ethically it’s the right thing to do – a person’s right to be involved | 6 Transforming Participation in Chronic Kidney Disease Rachel Gair

7. The Passive Patient • Healthcare can be profoundly disempowering • But most patients want to be treated as active participants – as co-producers of health | 7 Transforming Participation in Chronic Kidney Disease Rachel Gair

8. To a person centred approach…. | 8 Transforming Participation in Chronic Kidney Disease Rachel Gair

9. What is ‘activation’ and why? An activated person has the knowledge, skill and confidence to manage their own health and care This means • making informed choices • being a partner in their own care • self management and prevention This means • Better health outcomes • Quality of Life • Increased independence + control | 9 Transforming Participation in Chronic Kidney Disease Rachel Gair

10. Low activation = problems and opportunities | 10 Transforming Participation in Chronic Kidney Disease Date

11. A development scale | 11 Transforming Participation in Chronic Kidney Disease Rachel Gair

12. What are the questions the TP – CKD programme is asking? • Can PAM/CS-PAM/PROM/PREM measures be collected routinely within renal units? • Is the PAM related to PROM/PREM/Clinical results? • Can we introduce interventions that will increase a patient’s and team’s activation? Co-production as a core value | 12 Transforming Participation in Chronic Kidney Disease Rachel Gair

13. The first cohort of Renal Unit Teams • Birmingham Heartlands Hospital (Heart of England NHS Foundation Trust) • St Luke’s Hospital (Bradford Teaching Hospitals NHS Foundation Trust) • Coventry (University Hospitals Coventry & Warwickshire NHS Trust) • Derby (Derby Teaching Hospitals NHS Foundation Trust) • Hammersmith Hospital (Imperial College Hospital NHS Trust) • King’s London(King’s College Hospital NHS Trust) • Freeman Hospital (Newcastle Upon Tyne Hospitals NHS Foundation Trust) • City Hospital ( Nottingham University Hospitals NHS Trust) • Derriford Hospital ( Plymouth Hospitals NHS Trust) • Northern General Hospital (Sheffield Teaching Hospitals NHS Foundation Trust) | 13 Transforming Participation in Chronic Kidney Disease Rachel Gair

14. 2nd cohort – renal teams • New Cross Hospital - Wolverhampton • Royal Stoke University Hospital • St James’ - Leeds • Royal Sussex - Brighton Transforming Participation in Chronic Kidney Disease Rachel Gair | 14

15. Valuing Individuals -Transforming Participation in Chronic Kidney Disease

16. What are the questionnaires and how do they all fit together – TP-CKD Your Health Survey Symptoms IPOS Renal 17 questions & Overall Health ED-5DL 5 questions = PROM Renal Registry Who/Where/how 10 questions PAL spreadsheet Managing Your Health = PAM 13 questions CS PAM

17. What are the questionnaires and how do they all fit together – SHAREHD Your Health Survey Symptoms IPOS Renal 17 questions & Overall Health ED-5DL 5 questions = PROM Renal Registry Who/Where/how 10 questions PAL spreadsheet Uptake Indicators 8 memory, 3 comprehension 2 access Health Ecomonics 8 questions Managing Your Health = PAM 13 questions Task Summary & HHD option 14 tasks &1 questions Demographics 10 questions

18. | 18 Transforming Participation in Chronic Kidney Disease Rachel Gair

19. Click here for Patient View | 19 Transforming Participation in Chronic Kidney Disease Rachel Gair

20. PAM results | 20 Transforming Participation in Chronic Kidney Disease Rachel Gair

21. Clinical spreadsheet returns | 21 Transforming Participation in Chronic Kidney Disease Rachel Gair

23. Patient Activation Levels | 23 Transforming Participation in Chronic Kidney Disease Rachel Gair

25. Overall Health (1) Walking about Washing / dressing Doing usual activities | 25 Transforming Participation in Chronic Kidney Disease Rachel Gair

26. Overall Health (2) Having pain or discomfort Being anxious or depressed | 26 Transforming Participation in Chronic Kidney Disease Rachel Gair

28. Symptoms | 28 Transforming Participation in Chronic Kidney Disease Rachel Gair

29. Cohort data - % of staff by activation level (CS-PAM) | 29 Transforming Participation in Chronic Kidney Disease Rachel Gair

30. Changing Behaviours and Culture • How do we make this sustainable? • How do we bridge the gap between data and change in practice? • How do we encourage patients be more activated and target conversations/education to improve this? | 30 Transforming Participation in Chronic Kidney Disease Rachel Gair

31. E- Learning – Coaching ( Insignia) For the Renal Registry Group: URL:  http://training.insigniahealth.com Username: renalregistrytraining8 Password: renalregistrytraining8 | 31 Transforming Participation in Chronic Kidney Disease Rachel Gair

32. Coaching • Are symptoms affecting PAM score and then impacting on tasks fulfilled • Are patients being encouraged to look at PV screens • How are staff engaging with feedback of PAM/PROM as in changing conversations/behaviours • Are staff encouraged to coach to improve tasks | 32 Transforming Participation in Chronic Kidney Disease Rachel Gair

33. The Intervention Pyramid | 33 Transforming Participation in Chronic Kidney Disease Rachel Gair

34. Examples of Interventions used • Training for staff on PV • IPAD interaction with PV whilst on HD • Ask 4 Questions • Care planning • Letters to patients Least activated patients make the most gains | 34 Transforming Participation in Chronic Kidney Disease Rachel Gair

35. Knowledge, skills and confidence | 35 Transforming Participation in Chronic Kidney Disease Rachel Gair

36. Contact Think Kidneys How to find out more Karen Thomas Think Kidneys Programme Manager UK Renal Registry Karen.thomas@renalregistry.nhs.uk Rachel Gair Person Centred Care Facilitator UK Renal Registry Rachel.gair@renalregistry.nhs.uk Sarah Evans Think Kidneys Programme Coordinator UK Renal Registry Sarah.evans@renalregistry.nhs.uk Richard Fluck Clinical Co-Chair Internal Medicine Programme of Care NHS England Richard.fluck@nhs.net Ron Cullen Director UK Renal Registry Ron.cullen@renalregistry.nhs.uk www.linkedin.com/company/think-kidneyswww.twitter.com/ThinkKidneyswww.facebook.com/thinkkidneyswww.youtube.com/user/thinkkidneyswww.slideshare.net/ThinkKidneyswww.thinkkidneys.nhs.uk Transforming Participation in Chronic Kidney Disease Rachel Gair | 36