Shared Care – Its Role in Patient Outcomes Dr Paul Laboi : Consultant Nephrologist York Sonia Lee : SHAREHD Program Manger – Sheffield PAUL

The Shared Care Vision For people who receive dialysis at centres to have the information, opportunity and choice to participate in aspects of their treatment and thereby improve their experience and their outcomes. PAUL

Emphasis is on choice - taking part and engaging at a level that suits the patient as an individual. PAUL

Patient Perspective – Why ? “As a person and a patient, I care deeply about involvement, because I know it helps me as a patient to live more sustainably with my health conditions, and because I know that that, in turn, can help the National Health Service to exist more sustainably, too” “I need support because self-management is hard work. Maintaining positive behaviours and lifestyle changes, and keeping on top of it all, is not easy. Motivation waxes and wanes, as does my ability to cope.” PAUL Anya de Iongh Patient leader and self-management coach 2014, King’s Fund

Creating a Movement SONIA The SHAREHD programme is a 2 year programme of 12 trusts where we are gathering research data and coming together at learning events to form a collaborative and share ideas and progress QI tests of change The movement is wider – not restricted to those – anyone interested in progressing and promoting shared care with patients. Teams and trusts already doing shared care for a number of years either form the Closing the Gap programme of local CQUIN or other initiative. It is built into the Renal Specifications and Kidney Health Delivering Excellence programme so should be offered to all But making it fun , and part of day to day working rather that something extra is what will make it stick and be ‘the way we do things around here’ The #whyidosharedcare campaign is a way of showing solidarity and that there are 100s of people now involved – this is just a sample of #whyidosharedcare card. The learning events and SHAREHD programme Wave A and Wave B 4 day Nurse training lead by Tania Barnes The new 1 day managers course BRS conference and any other opportunities to show solidarity. You too can join in – this will continue to grow, and spread in a sustainable fashion. We are not using add additional within a Use the tools on the website (Denmark have done this_ Book into the courses Contact me if your trust wants to be in the 3rd wave looking to start next July.

The 15 Tasks…. Independent Supervised Not Doing Treatment related task Measuring your weight (tick the appropriate box)   Measuring your blood pressure and pulse Measuring your temperature Washing your hands prior to all procedures (and arm if fistula or graft) Lining your dialysis machine Priming your dialysis machine Preparing your dressing pack Programming your dialysis machine Needling your fistula/graft (one or both needles) Preparing your tunnelled line Connecting the lines to your fistula/graft/tunnelled line and commencing dialysis Responding to your machine alarms Disconnecting the lines and completing your dialysis Applying pressure to your needle sites post removal / locking your own tunnelled line Giving your own anaemia injections (such as epoetin) Independent Supervised Not Doing SONIA Dialysis process can be broken into 15 tasks as here They in shared care terms each tasks can range form not doing at all to full independent.

Baseline Research Data - Task Counts SONIA The aim of the program is to show an increase in number of patients doing 5 or more tasks. This is the baseline and as you can see it is nearly 5 already but this varies from site to site and Which tasks of the 15 are done also varies wide Ie its not the same there is variation patient to patient and sits to site.

Patient Activation Measures Assessing Engagement to Share Care Patient Activation Measures PAUL TPCKD and SHAREHD both Health Foundation funded programmes use PAMs

Offering the opportunity at every level 4 3 2 1 PAUL

Patient activation level by task count PAUL Correlation of PAM and tasks Can we influence via education to increase activation

Baseline Data – Unexpected Interest in HHD PAUL

3 Different Trusts – 3 Examples PAUL to introduce that we now have 3 examples SUNDERLAND YORK (Easingwold Satellite) PDSA Aim: To increase the number of patients taking and recording their own blood pressure pre dialysis. MANCHESTER Shared Care took off in satellite unit by training patients to calculate their target weight/ultra filtration ie not a ‘task’ but a fundamental ‘component’ of what and how HD works. Leads to much wider awareness that just participating ICHD tasks Can influence choices 24 hours a day including Dietetics Shared Care and HHD team is joined thereby Reducing training time required for patients to be competent to ‘go home’ Increases level of flexibility / support for patients is want HHD respite

PDSA - Easingwold renal Unit (YORK) Aim: To increase the number of patients taking and recording their own blood pressure pre dialysis. Plan: Start with four patients on our Monday, Wednesday, Friday AM shift. Make appropriate BP cuffs available. Create shared care board in entrance to unit. Use run charts to collect data. Make all staff aware via staff briefing. Create leaflet as teaching method along with face to face training. SOPHIE VIDEO

Feedback Patients reported difficulty locating new blood pressure cuffs as moved by staff. Staff wanting more information about project and reported technical problems with new cuffs. Lack of staff engagement – large staff turnaround. Study and Act 100% uptake of patients as expected given small sample size. E-mail sent to all staff including information on project, link to website and updates on what we are doing in Easingwold. Renal technicians asked for support regarding technical problems - currently looking into other brands of BP cuffs. Baskets set up at entrance to unit to make BP cuffs more readily available. List of patients put up in office so staff are aware of who is involved. Wall mounted run chart put up in unit for staff to fill in. SOPHIE VIDEO

Run charts At the start of the programme (14/7/17) - 2/40 After 6 weeks (25/08/17) – 18/40 After 9 weeks (15/9/17) – 25/40 Of our 40 patients at Easignwold Sattelite Unit – 10/40 declined to take part 5/40 are unable to take part SOPHIE VIDEO

3 Different Trusts – 3 Examples SONIA – Introduce Manchester

The Central Hub Dialysis unit Model of dialysis care - Manchester Satellite Fully assisted care Shared – care level 1 and above Self/shared – care level 4 Home The Central Hub Dialysis unit Complex and unstable patients JOHN

Prior to SHAREHD Scoped all the patients for potential shared or independent care. Established shared care leads on 4 dialysis units. Training also provided on the Home HD training unit. Patients training targeted for maximum independence. Shared/self care 33, training 7 = 40 patients. JOHN

Manchester - PDSA Patients to calculate their ultrafiltration Shared Care took off in a satellite unit by training patients to calculate their ultra filtration ie not a ‘task’ but a fundamental ‘component’ of what and how HD works. Lead to much wider awareness and improved fluid gains. Stimulated interest in learning from patients. The way in - “Do you know what your target weight is?” JOHN

3 Different Trusts – 3 Examples SONIA to INTRODUCE Sunderland SUNDERLAND PDSA for weight After session Shared Care and HHD team is joined thereby Reducing training time required for patients to be competent to ‘go home’ Increases level of flexibility / support for patients is want HHD respite

Durham Satellite Unit – 36 patients Washington Satellite Unit – 54 patients HHD – 25 patients 33% Satellite patients completing more than 5 of 14 tasks 17% Satellite patients are independent LAURA

Senior nurse support essential for continuity METHOD Senior nurse support essential for continuity Communication, documentation and audit trail Sub-team of specialised staff to focus on self-care Dedicated self-care machines Continuity of Service Regular evaluation adjustment of practice Secured finance fore home dialysis machinery “SHAREHD” – Learning from others LAURA

Be honest (verbal & none verbal) Use good judgment – Safety Fostering Trust Listen Be honest (verbal & none verbal) Use good judgment – Safety Be consistent Have a mutually beneficial attitude LAURA

Shared care - a vehicle for expansion of HHD LAURA Shared care - a vehicle for expansion of HHD

Impact on Patient Outcomes Can work in any unit and is available to all patients. Supports health education and activation not a one way street for people to dialyse@home “I’ve learnt so much more about dialysis and how my body works from shared care and I now feel as if I’m in the centre of my healthcare.” David from Sheffield Develops patient self-management skills PAUL Health literacy Develops patient self-management skills which helps support patients and carers to take a greater role in their own care. Can work within any unit to all patients. Uses existing resources more effectively and increases patient participation Is not a means to force people to dialyse at home but can allow more people will dialyse independently EVOLVES HEALTH LITERACY

We are recruiting a 3rd SHAREHD Wave starting July 2018 for 6 months WANT TO GET INVOLVED ?? We are recruiting a 3rd SHAREHD Wave starting July 2018 for 6 months Or Use the tools on the Website www.shareddialysis-care.org.uk and get started in your unit SONIA

All Patients, Trusts and Teams welcome JULY 4th 2018 Marriott Hotel – Leeds SHARED CARE EVENT All Patients, Trusts and Teams welcome SONIA

Regional innovation fund Our partners Patients and carers Participating acute health care trusts Y & H Regional innovation fund