Yorkshire & the Humber Programme for Shared Haemodialysis Care

1. Yorkshire & the Humber Programme for Shared Haemodialysis Care Renal Strategy Group Yorkshire and the Humber

2. The framework will be organised around 5 national outcome goals / domains covering the breadth of NHS activity How EFFECTIVE the care provided by the NHS is What the patient EXPERIENCE is like How SAFE the care provided is These will help the public and Secretary of State for Health to track: Domain 1 Preventing people from dying prematurely Effectiveness Domain 2 Enhancing quality of life for people with long-term conditions Domain 3 Helping people to recover from episodes of ill health or following injury Domain 4 Ensuring people have a positive experience of care Patient experience Domain 5 Treating and caring for people in a safe environment and protecting them from avoidable harm Safety The NHS Outcomes Framework will set direction and provide enhanced accountability

3. Engaged empowered patient Organised proactive system = Better outcomes Partnership Confirmation of the Evidence base Management of all long term conditions

5. Standards of conduct, performance and ethics for nurses and midwives • You must support people in caring for themselves to improve and maintain their health • You must recognise and respect the contribution that people make to their own care and wellbeing General Medical Council : Duties of the doctor   • Give patients information in a way they can understand • Respect the rights of patients to be fully involved in decisions about their care

6. The current situation • At present patients receiving haemodialysis either have it at home, where the patient self cares, or in the hospital where nurses deliver treatment and, in general, the patient is the passive recipient. • This may be because of an incorrect assumption about how much patients are able to do for themselves. It might also be because in busy units involvement from patients is discouraged as it is perceived to slow “the throughput”.

7. Why change? • Patients who contribute to their own treatment are likely to feel empowered by the process. • Patients who have become more involved in aspects of their care have described a greater sense of control and feeling more positive about their treatment. • The experience may also lead patients to request that they are considered for home haemodialysis.

8. Expected benefits • Effectiveness – eg enhanced care interaction • Efficiency – eg nurses being involved as problem solvers and trainers • Patient centredness– becoming 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

9. What we propose. • We plan to initiate self-care haemodialysis at the dialysis centres across Yorkshire and Humber. • We will to this by – • Setting up a course to teach dialysis nurses how to support patient to learn aspects of their own dialysis. • Supporting willing patients to learn as much of their own dialysis as they wish to.

10. Sharing the care in haemodialysis Training the trainers course QI QI QI QI QI QI Communications Qualitative evaluation Health economic evaluation

11. Expected benefits • Effectiveness – eg enhanced care interaction • Efficiency – eg nurses being involved as problem solvers and trainers • Patient centredness– becoming 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

12. Training the trainers Training nurses in the skill necessary to facilitate and support patients who want to learn more about their own treatment A programme of continuing education is required to strengthen resilience across the team, this will be embedded in the Closing the Gap Project.

13. Tell me, I’ll forget Show me, I’ll remember Involve me, I’ll understand

14. Self care task categories Observations Infection control Access including needling Prescription management Running dialysis Alarms and safety Setting up and stripping down Waste disposal

15. Quality Improvement Measures Outcome Measures -  Number (%) of patients performing observations Number (%) of patients able to establish access Number (%) of patients able to line & prime machine (alternative – set-up pack) % of staff involved in the programme Process Measures - Number (%) of Staff who are enrolled on the course Number (%) of Staff who have completed the course Number (%) of patients who have registered an interest / enrolled/ agreed to/ expressed an interest in the programme

16. Balancing Measure To monitor whether performance in other important areas is getting worse whilst efforts are concentrating on the project - want to ensure that these are maintained or even improved A measure of staff & patient experience/ mood using a monthly 'satisfaction poll' along the following lines: "How has the Shared Haemodialysis Care Programme affected your treatment (alternatives: experience/ care) today?" Please Mark along the following line: Most Postive                                                         Most Negative

17. Stakeholder communication & engagement group  Advise project on anticipated cultural change Oversee actions outlined in the equality impact assessment Development and implementation of Communication Strategy Ensure appropriate stakeholder engagement, including the development of staff & patient forums at each unit Ensure wider patient & public involvement Support development of ‘promotional’ materials, including newsletters, posters, presentations, leaflets and written reports Development of logos and branding Issues relating to intellectual property

18. Qualitative evaluation • A pilot study - to capture the experience through directed interviews with patients and staff Health economic evaluation • To demonstrate improved care at the same cost • Pilot service evaluation based on – • Time task study • Hospitalisation and safety reports.

19. Potential barriers • Lack of patient and staff buy-in into the process • Lack of motivation and inertia from staff and patients. • Clinical risk problems relating to patients being involved in the process of care • Nervousness from patients • Language barriers • Increased time on the dialysis unit required – leading to problems with dialysis scheduling and capacity.

20. Posts to support the program • 2 nurse clinical educators • Project manager • Clinical champions • A team of enthusiastic patients, carers, and health care professionals

21. Timeline • Set-up phase : Jan – Jun 2011 • Phase 1 : Sheffield and York from Jul 2011 • Phase 2 : Leeds, Bradford, Hull and Doncaster from Jul 2012. • By summer 2013 our aim is that 1400 of 1800 unit based dialysis patients across Y & H will have some involvement in their own care.

22. This project is supported by - Heath Foundation - £400 000 NHS Kidney Care - £50 000and the enthusiasm of patients, carers and health care personnel

23. Group discussions • Nurse training course design • Christine Stubbs, nurse lead • Andy Henwood, patient lead • Sharing the learning • Stephen Boocock, patient lead • Measuring success • Jackie Parr, commissioning lead • Making sense of patient and staff experience • Liz Glidewell, research lead