Welcome
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
22 JANUARY 2019 : The Marriott LEEDS
Programme Supported By Today is about…
• Celebrate the SHAREHD programme achievements • Understand the shared care “why” • Hear & see different shared care experiences • Review early SHAREHD results • Explore the shared care broader renal context • Acknowledge and thank all SHAREHD contributions
Please feel free to tweet as we go along @sharemydialysis #sharehd #whyidosharedcare
Shared Haemodialysis Care
"The objective of Shared Haemodialysis Care is for all people who receive dialysis at centres to have the opportunity, choice and information to participate in aspects of their treatment and thereby improve their experience and their outcomes. This requires a collaborative approach between health care professionals and patients : “without patient involvement at every level it would be misdirected and irrelevant". Small Steps (tasks) within shared care provides a framework to unlock potential
Which of the following dialysis related tasks would 4 you like to try? PAM Score 1-4 Blood pressure Weight 3 Hand and access hygiene Prepare pack Set-up machine Insert needles / Connect 2 access Program machine Commence dialysis 1 Discontinue dialysis Disconnect access / remove needles Strip down machine and clear away Problem solving Administering medications Scaling Up to 19 trusts
Lead Wave TRUST Shared Haemodialysis Care Central Dr Sandip Mitra 2 Manchester Dr Saeed Ahmed 1 Sunderland Dr Praveen Jeevaratnam 1 E&N Hertfordshire Dr Nicola Kumar 2 Guys & St Thomas Dr Jyoti Baharani 2 Heart of England Dr Elizabeth Garthwaite 2 Leeds Dr Albert Power 2 North Bristol Dr Alastair Ferraro 1 Nottingham Dr Veena Reddy 1 Sheffield Dr Babu Ramakrishna 1 Wolverhampton Dr Mark Lambie 1 North Midlands Dr Paul Laboi 2 York Dr Asheesh Sharma 3 Liverpool Dr Veshal Dey 3 Ayrshire & Arran Dr Ying Kuan 3 Western Trust Dr Jennifer Hanko 3 Belfast Dr Phil Evans Salford Royal Dr Didem Tez 3 South Tees Dr Clara Day 3 QE Birmingham Collaborative Power
Action Period “patients & staff Team to “turning reflective Calls A Shared working Team learning into Vision together sharing Support action” ownership & control” Patient focus Sharing Group resources
Sustainability Co Plans Production
Toolkits and Quality “making Shared Roadmaps Improvement Care everyone’s responsibility” “real world Teams of HCP Learning co-production” and Patients events Transforming Participation in Chronic Kidney Disease – Report Findings
• HD patients significantly more likely to have lowest activation scores • Patients living in deprived areas significantly more likely to have lower activation scores • Workforce training needed to enable better support for low activation levels
Rachel Gair et al 2019 Patient reported Experience of Kidney Care in England and Wales 2017
• Analysis by age, sex, ethnicity, stage of disease showed no significant difference in experience based on those characteristics
Fiona Loud Policy Director Kidney Care UK The NHS Long Term Plan
People will get more control over their own health and more personalised care when they need it • better support for patients, carers and volunteers to enhance ‘supported self-management’ particularly of long-term health conditions
Stronger NHS action on health inequalities • every local area across England will be required to set out specific measurable goals and mechanisms to narrow health inequalities over the next 5/10 years.
www.longtermplan.nhs.uk Jan 2019 Session 1 Why do Shared Haemodialysis Care ? Chair : Fiona Loud
Key Note Speech: “Why Bother with Shared Care - Particularly in the Renal Donal O’Donoghue Unit ?”
The Joy of Supported independence Tara Bashford SHAREHD Research Findings so far …. Steve Ariss & Expert Panel Discussion James Fotheringham
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Programme Supported By Why bother with shared care, particularly in the renal unit? Professor Donal O’Donoghue Registrar, Royal College of Physicians
22 January 2019 Shana Alexander, LIFE magazine, 9 November 1962
FigureFigure 2: Description of PAM Levels FFigure 3: Median PAM score by age Figure 5: PAM levels by deprivation Figure 6: PAM levels by symptoms (POS-S renal) Figure 7: PAM levels by quality of life (EQ-5D-5L) Figure 10: Haemoglobin by PAM level by Modality Figure 4: PAM levels by treatment Figure 8: Median PAM score by renal unit Table 1: RAG assessment of participating units Figure 1: Knowledge, skills and confidence cube Figure 9: Overall distribution of the difference in PAM score between first and second PAM surveys Patient Involvement: a Paradigm Shift Old method New Method What is performance? Outcomes!
CLINICAL FUNCTIONAL PATIENT VALUE = QUALITY OUTCOME EXPERIENCE (COMS) (PROMS) (PREMS) COST
• Clinical quality includes outcomes and safety • Functional outcome as measured by PROMs • Patient experience includes access and satisfaction measures
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Programme Supported By The Joy of supported independence
Tara Bashford – Liverpool Royal
My dialysis journey
Flexibility Support Confidence Friendship
Why Shared Care? 10 months of Shared care
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Programme Supported By SHAREHD Evaluation Findings
Please note some slides have been removed as they are subject to further analysis in readiness for formal publication
Dr Steve Ariss & Dr James Fotheringham Evaluation Work-packages
• Realist/Developmental Evaluation (Developing, refining and testing theories) • Controlled Trial: Stepped wedge (Numbers of tasks & HHD) • Principal Component Analysis (How patient characteristics relate to tasks) • Linkage to HES data (Hospital service use) • Health Economics (Cost per QALY, compare activity costs, cost for additional tasks/HHD) Programme Theory
Share HD Trust intervention Main/ Learning events: QI Shared Sustained Acute unit methods, Networking, competency, Care opportunity Peer support, Sharing and motivation Satellite Staff ideas and materials, of staff Discussing problems and Increased Satellite Consistent & solutions, Presenting involvement equal Patients experiences, Check- in Care opportunities points & ways to for patients Context: measure progress Wider range Ongoing -Relationships of patients monitoring between units Introduce Website: Sharing ideas and materials involved and -Leadership Changes adjustment -Budget (training, Action period calls: equipment, Discussing problems and More Shared care is materials) solutions resilience business as -Stability of staff usual/ has high profile -Patients’ needs/ Site-specific Changes have an effect on: circumstances -Service history working practices/ environment/
-Built environment opportunities/ motivation/ capability/ Variable & -Working processes organisational readiness etc. Some low volume
Shared Care shared No External Intervention care Quantitative Data: The Stepped Wedge Testing if the SHARE-HD Intervention works
Tasks HHD Interest Your Health Survey Rationale and design for SHAREHD: a quality improvement collaborative to scale up Shared Haemodialysis Care for patients on centre based haemodialysis. BMC Nephrology: 10.1186/s12882-017- 0748-6 Quantitative Data: Our Endpoint - 5 Tasks or more First four task are easy? Happen away from the dialysis space?
Number Patients of Tasks (n) 0 64 1 83 Patient Preparation 2 104 Machine Preparation & Dialysis Initiation 3 85 4 57 During and after dialysis 5-9 130 10-15 58 Overall 581 What did we learn about patients and tasks Some things you can’t change Overall Less than 5 Tasks More than Five (n=581) (n=188) Tasks (393) Mean Age (Years) 62.3 64.9 57.4 Male Sex (%) 61.7 62.4 60.3 Ethnicity (%) White 81.3 81.3 81.3 Non-White 18.7 18.7 18.7 Dialysis Access (%) AVF/AVG 73.2 67.2 84.1 Tunnelled Line 18.6 23.4 10.0 Self Needling (%) Doing 12.4 2.2 29.7 Maybe + 21.8 21.3 22.8 Health Literacy: Trouble with forms (%) Quite Confident + 58.1 52.2 68.8 Interest In HHD (%) Yes 14.9 12.1 20.9 No 70.7 75.3 61.0 Unsure 14.4 12.6 18.1 EQ5D-5L QoL 0.698 0.669 0.751 Moderate Difficulty In Mobility (%) 35.3 43.2 27.8 Mean Tasks (N) 4.0 2.0 8.2 Baseline Patient Activation and Tasks (cross-sectional)
THE RELATIONSHIP BETWEEN PATIENT ACTIVATION LEVEL AND SELF-PERFORMED TREATMENT RELATED TASKS AMONG PATIENTS RECEIVING IN-CENTRE HAEMODIALYSIS: THE SHAREHD COHORT STUDY. UKKW 2018 Qualitative Analysis Patient Activation
Developmental model of activation involving 4 stages: 1. believing the active patient role is important, 2. having the confidence and knowledge necessary to take action, 3. actually taking action to maintain and improve one's health, and 4. staying the course even under stress
(Hibbard et al, 2004) Increase PAM through motivational interviewing and health coaching. Patients with lowest levels of activation make the most gains.
Patient Stages of Change
‘levels of motivational readiness’ 1. Pre-contemplation, 2. Contemplation, 3. Preparation, 4. Action, and 5. Maintenance/Relapse (Prochaska et al, 2005)
N.B. Some patients are doing SHD but don’t consider this to be shared care(mostly basic tasks: handwashing, weight, BP, Temperature, compressing etc.) . When tasks become business as usual ‘motivational readiness’ becomes a redundant theory and social practice models more relevant, motivation becomes moral compliance with social norms.
Patient Involvement Models
1) All or 2) Route to 3) Segre- 4) 5) Integrated 6) Business 7) Rehab Nothing HHD gated Transient ‘doing as usual approach shared care’
HHD Shared care in Self care separate bays Most patients Shared care on Self care Patients facilitated to be unit Training Training Training selected for Most patients as involved as shared care on facilitated to be they want. unit as involved as Training is part No they want. of culture No involvement No involvement involvement Training in Training is part performed by separate bays of culture all, on an performed by ongoing basis. all, on an Range of Training No ongoing basis approaches to involvement give opportunity for No involvement involvement (translators, vision aids etc.) (not selected) No involvement Due to No practical/ involvement cognitive issues Due to issues etc. etc. Staff Involvement Models
4) Distributed team. 3) Small 1) Lone 2) Shared care leader Some nurses segregated Champion supporting shared care team throughout the unit
8) Co-production. All staff committed to 7) All staff 6) All nurses 5) All nurses supporting shared committed to committed to involved to some care with service- supporting shared supporting shared extent users care care Some key themes
• Spontaneous shared care: Some patients will tend to want to be more involved in their care with little or no encouragement or support (personality, past experiences, health reasons, lifestyle etc.) • Shared care visibility: Awareness is the first main step towards equality of shared care (separate bays/sessions, staff discussing shared care, posters, leaflets, awareness raising events, peer support, pre-dialysis etc.) “the more the programme is going on and we are getting more and more patients doing it and obviously they do see other patients, and say ‘what are you doing’? and then they will come and ask what it is all about” • Start early: It can be more difficult to introduce shared care as a change to treatment. However, visibility helps; being aware of shared care can raise curiosity and lead to taking on more tasks • Resilience: Don’t rely on a small number of people (or one person) to maintain shared care, co-production with patients can keep shared care as a priority
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Programme Supported By
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Refreshments & Marketplace Viewing
Resume at 11.30am
Programme Supported By
Session 2
Lessons from the Quality Improvement Chair : Liz Hill Smith collaborative on delivering Shared Care.
Its all about Partnership Sunderland Team 15yrs of SHC – Riding Ebbs & Flows Guys & St Thomas Peer Education and SHC Salford Royal Team Feed and water a SHC culture Heart of England Team
Expert Panel Discussion
City Hospitals Sunderland
Department of Renal Medicine Durham Satellite Unit – 60 Patients Washington Satellite Unit – 54 Patients Medical Renal Unit – 150 Patients Home HD – 24 Patients
Excellence in Health putting People first
Shared Care 2014 CHS Pledge “continue working in partnership together to improve service options for dialysis patients”
Excellence in Health putting People first Creating a ripple effect
Excellence in Health putting People first Our Vision
CHS Renal Service Design and vision for Shared Care
• Increase flexibility for service for the user
• Safer treatments through education and understanding more
• Provide more treatment options and choice. Self-care, home haemodialysis
• Giving back control and ability to decide how, when and where …
• Developmental opportunities for the whole staff team
• Shared care is the norm for those who wish to be involved
Excellence in Health putting People first Shared Care Partnerships 4 Partnerships of our Shared Care Journey
Excellence in Health putting People first
1.Staff Team Partnership Planning / Continuity Teamwork / Communication Evaluation / PDSA
Excellence in Health putting People first Excellence in Health putting People first Staff team partnership Planning
Excellence in Health putting People first 2.Staff and Patient Partnership Nurse and patients combine resources and experience. Shared experiences. Renal Information days. Staff and patient collaborative in shared care (Sheffield). More recently – Northern shared care hub
Excellence in Health putting People first Collaborative
Excellence in Health putting People first Time and space to learn
Excellence in Health putting People first
3. Partnership with senior tier for service design only possible through recognition of shared care growth
New Unit with dedicated self-care space for future out of hours service Expansion of home dialysis service
Excellence in Health putting People first
Taking control
Excellence in Health putting People first 4. Partnership – Support from Charitable Organisations
Excellence in Health putting People first Excellence in Health putting People first Excellence in Health putting People first
Thank you for listening
Excellence in Health putting People first
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Programme Supported By 15 years of Shared Care – Riding the Ebbs and Flows
15 years ago our journey started with these aims:
• For patients to reach their maximum self-care potential with 10% fully independent across all dialysis units
• To support staff to establish their own strategies for implementing shared care
• To increase take up of home HD
• To ensure long-term sustainability
Initial impact:
• Almost 10% of patients approached became fully self-caring • A further 50% were self-caring to some degree • Increased patient choice Home HD Nocturnal home HD Designated self-care areas • Culture change Independence Involvement • Re configuration of future HD units
Sustainability 2008:
• Celebrate successes • Support leadership • Build effective teams • ShareHD areas in satellite units • Identify clear, patient centred, benefits (appointment times, waiting times, flexibility) • Increase access to home HD – ShareHD pathway to home • Cultural shift - ‘This is the way we do it here’
Over the next 10 years…..
Outcomes: Challenges: • Pockets of excellence • Staff turnover • Evidence of shared care in all 6 • Competing priorities satellite units • Patient dependency • Home haemodialysis pathway – • Demand / capacity the majority of patients going home are ShareHd patients • Motivation (staff & patients)
Home HD 2008-18
Home HD take up 2008-18 • 11 patients started 60 Home HD in 2018 53 of which 7 were 50 49 47 from the ShareHD 45 43 43 programme 40 41
35 34 30 31 30
20
10
0 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 ShareHD 2019
Our aims:
For people who receive dialysis at centres to have the opportunity and information to participate in aspects of their treatment and thereby improve their experience and their outcomes (ShareHD)
• For patients to reach their maximum ShareHD potential
• For patients to feel more involved in their care (measured via patient experience surveys)
• To challenge the culture: – Dependence to independence – Passivity to activity
• To increase the take-up of home therapies
Our approach: • Baseline measures of 15 tasks • Staff survey • Staff workshop – Present findings from above – Discuss drivers and barriers; identify support required – Agree strategy – Involve: • PDN • home team • consultants • pre dialysis team • patient champions, peer supporters and KPA • Encourage the teams to take ownership
Motivation and Ownership • Encourage ownership by supporting teams to develop local strategies – one size does not fit all! • Train the trainers • Involve the whole MDT especially consultants • Strengthen the link between shared care teams and home dialysis team • Use patient feedback & patient stories to motivate other patients and staff • Share and celebrate successes, even the small ones! • Expect setbacks, don’t lose the momentum, just keep going….
Roll-out plan to all satellite units: – New Cross Gate • Shared care bay • Home HD successes – Camberwell • All patients doing some shared care in main unit with 4 patients dialysing independently in self-care room – Borough • Shared care bay with flexible appointment times – Tunbridge • Home HD training centre for Kent patients – Sidcup • Home HD successes via shared care pathway – Lewisham (moving to new centre this year)
Our vision…..
• Increase access to home dialysis – ANP to lead the team – Closer liaison with satellite units / ShareHD teams – Continue home dialysis roadshows – More Peer Support and Patient Champions • New starter area – Seamless transition from low clearance to HD – Focus on education and planning – Involve all the MDT – Promote involvement, shared care and home therapies • Patient involvement – For all patients to be actively involved in their care as far as possible and to work in partnership with clinicians to improve their outcomes and experience
Our latest initiative to support patient involvement:
Last year we made a series of 4 films: • Living with early stage kidney disease • Having dialysis (home HD, PD, ShareHD) • Having a kidney transplant • Supporting you to manage your kidney condition Each film features clinicians talking about treatment options and patients telling their stories with an emphasis on partnership working and self care. The films can be viewed on YouTube Contact us: • Ros Tibbles, Service Improvement Nurse [email protected]
• Kevin Evans, Satellite Dialysis Matron [email protected]
• Nicky Kumar, Dialysis Lead Consultant [email protected]
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Programme Supported By Salford Renal Unit Wigan Renal Unit Bolton Renal Unit
Emma Jenner – Salford Unit Matron Daniel Clarke – Patient Volunteer Who we are
Launch Day
ShareHD poster
Collaborative working between Units Our ShareHD Empowerment of staff
Journey Patient & Staff engagement board
Daniel Clarke – our patient volunteer
Test of change – Bay Working
Test of Change – Shared Care buddies • 5 dialysis units across the north of Greater Manchester
• 396 ICHD patients Who are we? • Previously involved in shared care
• Enrolled in the ShareHD program starting from November 2017 • Planned launch day across all units – Monday 30th July
• Launched new bed allocations Launch Day • Started working through new handbook with current and new patients
• Establish patient learning styles ShareHD poster for all units • Monthly meetings to share progress Collaborative • Combined database working containing all patient trackers between units • Element of competition between units
• Patient numbers tracked on a graph for all to see • Completing the ShareHD course
• Attendance at ShareHD Empowerment learning events of Staff • Monthly staff goal
• Positive reinforcement for nurses towards the patients Patient & staff engagement board Daniel – Our patient volunteer • Simple visual allocation
• Beds facing each other Test of change- Establishing • Roll out of bay working Shared Care successfully Bay Working • Allows for 1:1 training
• Now established at all 3 units • Competent patients
• Assist in teaching
• Positive feedback from other Test of change patients - Shared Care Buddies • Currently have 2 shared care buddies at Salford
• Wigan & Bolton have identified prospective buddies
Colin More community – very Audrey personal, get to know the Like being in a bay nurses better Enjoy helping other More homely, better now patients as a buddy it is in a bay – gives me a sense More knowledge around of purpose the dialysis Feel supported by Better mental health since the nurses having new shared care Patient community Stephen feedback Good idea to involve Maria patients in their own care Enjoy the experience Gives me greater Like getting to know knowledge about my the people, don’t feel own condition isolated, amongst Better social aspect – friends new group of friends, ‘like a little family’ feel this is the most Calmer environment important Database established which is logging patient tracker numbers each month
Data - How are Salford – 24% of ICHD patients participating in ShareHD we measuring Bolton - 19% of ICHD patients participating in ShareHD progress? Wigan – 25% of ICHD patients participating in ShareHD Any Questions?
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Programme Supported By Feeding and Watering a Shared Care Culture
Birmingham Heartlands Hospital @ UHB Creating a strategy
• Involvement from Clinical Director to frontline staff
• Embedded in our Renal Pathway
• Sustainability Plan
Creating Sustainability- raising awareness
In house 2 Day S/C and Home Therapies Awareness workshop • Self directed study • Practical learning skills • Group work sessions • Topic included: accountability, barriers to overcome, communication, hints and tips, teaching cannulation, SMART and PDSA cycles, s/c to HHD • Guest speakers • Engaged staff to inform others on how they increase uptake in their unit. • Group discussions Road Shows Patients have the strongest voice- Give them a platform to share their journey- coffee mornings and acknowledgment
Creating a Culture How do we move to stage 4/5?
• Renal pathway • Whatsapp group • Sustainability Report • Shared Care Focused Group • Discussed in MDT Meeting • Recognising outstanding • One to one teaching contribution by staff • Handovers • Industry assisting in education • Posters • Challenge (don’t be scared) • Appraisals • Support • Auditing
Organizational culture will eat strategy for breakfast lunch and dinner
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Programme Supported By Session 3
Interactive Workgroup Sessions
A Implementing New Starter dialysis pathways Vicky Ashworth B Early CKD education Nicky Thomas C Delivering Co-production Andy Henwood D Dialysis in 10 years time – Blue Sky thinking Liz Pryde E Getting started with Shared Care Tania Barnes F Sustaining and growing Shared Care Paul Laboi Session 3 : Interactive Workgroup Sessions
A New Starter dialysis pathways B Early CKD education A C Delivering Co-production D Blue Sky thinking E Getting started with Shared Care F Sustain and grow Shared Care
Trevelyan B C (1st floor) F E D
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Lunch & Marketplace Viewing
Resume at 1.45pm
Programme Supported By
Marketplace
Charity & Commercial Stands Lunch in the restaurant
Have your say Video - box
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Programme Supported By New Starter Dialysis Pathway
“All HANDS TOGETHER” SHARED HAEMODIAYSIS CARE EVENT 22nd JANUARY 2019
Asheesh Sharma Consultant Nephrologist Maria Fraser Consultant Clinical psychologist (Renal) Vicky Ashworth Advanced Nurse Practitioner Susan Casey Haemodialysis Sister Learning Objectives
• To explore where the opportunities to improve patient experience and outcomes maybe in your department
• To share our learning and experience from Liverpool
• To discuss change ideas to take back to your own places of work Starting HD may feel like diving into an abyss…. Frightened, Patient Voice Scared, worried Am I going to die ? Inappropriate dialysis time
Physical Complications Tired, exhausted
No Clear Plan
No timely medical review Who do I speak to about my concerns Renal Registry: Unadjusted 90d survival 1 year following 90day survival High early mortality observed in USRDS
Cause of this early mortality?
Opportunities for improvement?
Non-modifiable Modifiable Age>65 Timing of dialysis initiation Age 40-64 Pre-dialysis care Smoker High or low weekly dialysis dose Previous CVE High SBP pre-HD CKD aetiology Low blood flow • Hypertension/ischaemic • Non-recovered ATN HD via a line • Diabetes
• Think about how patients start dialysis within your own units
• Is there any opportunity to improve the patient experience and enhance their outcomes ?
• Are the any barriers to this ?
15 minutes discussion, 5 minute feedback Patient Journey
Delivery of care is multi- disciplinary and complex Patient Journey: Reality
• Not patient-centered • Unstructured • Unreliable • Prone to congestion
Our Vision in Liverpool
Apply QI methodology to develop a novel nurse-led pathway to improve coordination of personalised multi-disciplinary care
Reduce 90d mortality of incident HD patients by 30%
To reduce patient distress on starting HD
New Starters
Baseline Year 1 Year 2 Number of patients 78 94 91
Mean Age (SD) 58.4 (15.6) 60.4 (14.09) 59.7 (16.21)
% Male 62% 59% 59% % Diabetic 45% 43% 46% Mean eGFR Starting HD 8.6 (2.7) 7.7 (2.4) 8.0 (2.61) (SD) The Importance of Screening
• Screening for distress is clinically relevant in order to provide interventions for those patients who are prone to develop depression and psychosocial well being should be a priority (Sfrykou, 2014)
• Research from cancer studies suggest that patients tend not to spontaneously express emotional concerns – patients need to be asked
• Implementing systematic distress screening should be done routinely as a first step to offering patients appropriate interventions (Goh & Griva, 2018) • Psychological distress is considered a risk factor for developing mental health problems
• Prevalence of depression or anxiety in the ESRD population is 4x higher than in the general population
• Many patients find the transition to dialysis frightening and traumatic (Combes et al, 2015)
Psychological Impact • Untreated psychosocial problems are associated with withdrawal from dialysis, poor medication and diet compliance and reduced ability to engage in RRT education and treatment choice (Taylor et al, 2016)
• Patients want improved lower level support, particularly in the area of adjustment and coping, however their needs tend to be ignored and frequently untreated (Tong et al, 2009)
• More than 1/3 of dialysis patients experienced emotional difficulties during the transition to dialysis and early months on dialysis (Combes et al, 2015)
Psychological Assessment
• 25% of patients have been referred for assessment as part of the pathway • Individual assessment involves exploring areas such as
Adjustment/ Impact on Altered body Fatigue and Mood Anxiety Lifestyle Treatment Coping relationships image Sleep Case Study Patient with Learning Difficulties and past mental health issues who also has diabetes
Distress Score = 10.
Very anxious and worried about how she will cope on dialysis with all the new people and the change to her routine.
Saw for a few sessions to explore concerns and normalise some of the issues raised. Liaised with nursing staff.
She then managed well for a number of months but needed to be referred back when she tried to pull her neckline out. As she had already seen patient was able to address recent issues more easily with her. Care takes time
Improved Process
Baseline Year 1 Year 2
% with a documented transplant 61% 95.5% 96.5% status at 90 days
% with definitive vascular access 89% 95% 98% plan at 90 days
% with defined dry weight at 2 58% 99% 99% weeks
Time interval to first clinic 98 DAYS 42 DAYS 52 DAYS Improvements:
Baseline Year 1 Year 2
% with definitive vascular access at 40% 52% 51% 90 days
% with a plan for a home therapy at 8.5% 24% 16% 90 days
Days spent in hospital in the first 90 12.2 days 9.5 days 10 days days
Unadjusted 90 day mortality 5.1% 2.1% 1.1%
Inpatient stays estimated saving 144K per year Improved Experience: PREM questionnaire and distress thermometer
Patient distress diminished from a score of 4.3 (week 2) to 2.4 (week 8) Patient feedback has been strongly positive • Thinking about what has been implemented in Liverpool
• Have you any ideas of how things may be improved at your units ?
• Are the any barriers to this ?
15 minutes discussion, 5 minute feedback Next steps….
• Key elements of intervention seem to be reproducible at other sites although changes are needed to suit individualised area
• Consider a cluster randomised or step wedge trial design to evaluate more widely • Significant potential gains at scale
Thank you.
“ALL HANDS TOGETHER” SHARED HAEMODIALYSIS CARE EVENT
Refreshments & Marketplace Viewing
Resume at 3.15pm
Programme Supported By
Session 4
15:15 All Hands Together Chair : Michael Nation
What Shared Care means to Commercial Partners Commercial Partners Shared Care Experiences Video
16:00 Concluding Remarks Martin Wilkie What Shared Care Means to our Commercial Partners Question 1
As a company why do we think shared haemodialysis care is important (is there evidence)?
Question 2
What can we do as a company to further the objectives of shared haemodialysis care? Question 3
Why do we think that a positive patient experience has been squeezed out of in centre dialysis over the last few decades? Commercial Charter
As commercial partners we support the Shared Haemodialysis Care vision and agree to help maintain and grow the movement.
Patient and Staff Shared Care Experiences
Shared care is a gift. We didn’t realise just how valuable it was until we unwrapped it! The Shared Care Movement
Closing the Gap (Y&H) Continual development and collaboration SHC Course FUTURE to share, teach, support and SHAREHD report
MANY INDIVIDUAL LEARNING and INITATIVES COLLABORATION BUILDING ON A • Manchester 1-4 levels • 19 trusts involved CONSISTENT • Guys & St Thomas Self Care • Individual contexts embraced FRAMEWORK • Wales self care • Collaborative • Nottingham SYD (Share your Dialysis) Canada
Over 518 staff trained via nurses course
1 staff & 1 Trust
1 9 staff + 2 trusts 8 staff & 2 Trusts 255 staff – Denmark / Closing the Gap Sweeden 32 staff & 3 Trusts & 3 Trusts
42 staff & 2 Trusts 90 staff & 3 Trusts 23 staff & 1 Trust
19 trusts involved in 2 staff & 3 Trusts 15 staff & 1 Trust 19 staff & 1 Trust
22 staff • Its Not about mandating
• It is all about Collaboration – Patient co-production – Taking, Sharing and learning with & from each other – Changing the culture
Key Learning Points from Learning Event feedback that Teams say will make a different to scaling up their Shared Care programmes
Engage your Staff and Listen to the Patients Use the website tools, roadmap and ideas from others Go back and regularly measure to check where you are Start small, feed and water
Learning event objectives, agendas, measures , lessons and collateral can be made available to use locally - contact [email protected]
Some key points from todays meeting • Your outcome is influenced by the house you are born in - Donal • Patient partnership makes a big difference – Emma & Daniel • ShareHD is individualised – not everyone want to go home – Tara • Learning dialysis related tasks does increase PAM – James • Co-production – all staff committed to supporting ShareHD – Steve, Laura, Ros, Joyti https://www.shareddialysis-care.org.uk Poster Award Thankyou to our Patients THANK YOU