1. How a QI Collaborative is giving haemodialysis patients the Choice to be Active in their care
Your Speakers are :
Andy Henwood Sonia Lee
Programme Supported By

2. Shared Haemodialysis Care
follow us -
@sharemydialysis
#whyidosharedcare

3. During this presentation please think about a personal experiences of being involved in your own care ….
If good how can it be done more
If bad what could have been done better ?

4. Why is Dialysis Important?
In England 20,000 people attend three times (16 hours) each week to receive haemodialysis.
It has a major impact on quality of life
The survival for people on dialysis is similar to that of a major cancer
The cost to the NHS of treating kidney failure is £636 M per year
“….my life revolves around dialysis every other day”
People become so disempowered on hd
Patient carer quality of life

5. The Shared Haemodialysis Care Vision
For 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.

6. A shared vision to place the patient at the centre of their care
Triple Aim:
• Creating better outcomes
• Better experiences for people
• Better use of resources
Did you know that the NHS 5 year strategy states …..
In Centre Dialysis Unit Specifications states …….
The whole rational of the evolution of the STPs is to be Patient Centred ……
Shared Care underpins all of the above….. It should be offered to you and you should be supported to go at whatever pace you choose.
This is not in isolation is it everywhere – within the programme it is sites and we know that others sites have and are already doing or thinking about doing this…. We are pushing at an open door.

7. Transforming participation in CKD
Shared Decision Making
Care Quality
Commision CQUINS
AKI Scaling Up
Patient view
Closing the Gap
Part of a bigger picture of initiatives to engage patients and Self management within the Kidney Community

8. Scaling Up Implementation – SHAREHD Programme Overview
Engaging front-line teams through local refinement and implementation
Engaging patients through co-production
Learning Events
Research Collection

9. Who are the teams ? Dr Sandip Mitra 2
Lead
Wave
TRUST
Dr Sandip Mitra 2
Central Manchester Health Care Trust
Dr Saeed Ahmed 1
City Hospitals Sunderland NHS Foundation Trust
Dr Paul Warwicker
East & North Hertfordshire NHS Trust
Dr Nicola Kumar
Guys & St Thomas NHS Foundation Trust
Dr Jyoti Baharani
Heart of England Foundation Trust
Dr Elizabeth Garthwaite
Leeds Teaching Hospitals NHS Trust
Dr Albert Power
North Bristol NHS Trust
Dr Alastair Ferraro
Nottingham University Hospitals NHS Trust
Dr Veena Reddy
Sheffield Teaching Hospitals NHS Foundation Trust
Dr Babu Ramakrishna
The Royal Wolverhampton NHS Trust
Dr Mark Lambie
University Hospital of North Midlands
Dr Paul Laboi
York Teaching Hospitals Foundation Trust
1= First wave site 2= Second wave site

10. Breakthrough Series Collaborative
Step 1 (first 6 teams) completed 4 learning events & 4 Action period Calls
All events documented for evaluation and feedback purposes
All teams attended all learning events – intermittent attendance at APCs
Step 2 (second 6 teams) first (QI ramp up) learning event 12th July
First Joint event with all 12 teams September 19th
Lessons / Challenges
Time away from unit for professionals at learning events must be used wisely :
Recognition of ebb and flow - maintain enthusiasm and support crucial
Had to think very carefully about content and ensure they were FUN
Have to make it easy to get there – CARs / pre-booked train tickets
Technology and working practice limit the benefits of conference calls Trying new techniques (Zoom) but still working on it 

11. Learning to Use Quality Improvement methodology
12 trusts working together in a collaborative
Team Support
Shared Vision
Sharing Resources
Patient & HCP Teams
Learning to Use Quality Improvement methodology
Learning events
Networking
Action learning
Liz Hill-Smith 27/01/2016
That "change support" I mention in last slide underpins each of these. Shared Vision needs to be shared with the "money and resource" people, the Team needs to include them, Comms plans needs to hit their buttons etc. Although you can choose your sites to ensure this sponsorship is there at the start, ongoing effort will be no doubt be needed to maintain and embed this through the project duration.
Patients competitive about their bloods – motivation, open days, patient

12. Total number of staff trained = 433
Area figures of Staff trained from courses 1-32
Total number of staff trained = 433
Updated August 24th 2017 4 1 1 6
237 21 28 73 22 2 9 16 14

13. Program Structure Advisory & Dissemination Board
Chair : Donal O’Donoghue
Commercial
Engagement
Panel
Patient Group
Chair : Andy Henwood
Programme Board
Chair : Sonia Lee
Evaluation Advisory Group
Chair : Sue Mawson
Workstreams
Communication
Lead :
Angela Lumsden
Spread / Sustainability & Business Development
Lead : Paul Laboi
Learning Events
(Co-Production interventions)
Lead : Paul Harriman
Evaluation
(Qualitative & Quantitative)
Lead : Steve Ariss

14. conferences Communications TWITTER Resources for support
Strong, growing network working as a collaborative
TWITTER
@sharemydialysis
#whyidosharedcare
conferences

15. Regional innovation fund
Our Partners
Patients and carers
Participating acute health care trusts
Y & H
Regional innovation fund

16. Generic Shared Care Driver Diagram
Outcome
Primary Drivers
Secondary Drivers
Commissioning &
Commercial
Environment /
Operation
Efficacy ie “TIME”
Increased Shared
Care
All Levels of
Patient Engagement
All Levels of
Staff Engagement

17. Generic Shared Care Driver Diagram
Outcome
Primary Drivers
Secondary Drivers
Data Compliance
Commissioning &
Commercial
ICHD Capacity
Maximisation of Efficiencies
Environment /
Operation
Efficacy ie “TIME”
Effective Workforce Planning & Comms
Correct Cultural Environment
Correct Physical Environment
Increased Shared
Care
Equipment Availability
Increased Health Literacy
Facilitation of Patient Centred Flexibility “what matters to me”
All Levels of
Patient Engagement
Increased Renal pathway and choices awareness
Increased confidence & Trust
Control of disease / treatment
Staff Education / Awareness / Skills
Increased Renal pathway and
choices awareness
Directorate KPIs and uPDATES
All Levels of
Staff Engagement
Policies and Procedures

18. Linking up Global Aim to Sustained Change
Primary Drivers
Secondary Drivers
Change Ideas
Measures
PDSAs
Environment Design
PDSA 1
Sustain 
SHARED CARE
Patient
Engagement
PDSA 3
Increase numbers
Increase Patients monitoring Blood Pressure in Waiting Room
Staff
Engagement
Facilitate for Patients to be Active in their Care
PDSA 2
Identify barriers
Weekly monitor
PDSA 1
How to measure
Improvement Ramp
On the left is our overall aim – we want to increase Shared Care
Primary drivers are the things that have a direct impact on the overall improvement goal They are the FACTORS that Cause the outcome
To the right of the primary drivers – are the secondary drivers
Secondary Drivers and the factors the influence the Primary drivers – 1 secondary driver can influence multiple Primary drivers

19. HeFT
Aim – increase opportunity
for patients
to ask staff for information
York
Aim – Increase patient
awareness of
dialysis Prescription
Stevenage
Aim - Location of
shared care training
Nottingham
Aim -Waiting
Room Observations
P D
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P D
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Stoke
Aim –
Recording
weight & BP
P D
S A
Wolverhampton
Aim - Observation
Recording method
P D
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Bristol
Aim – increasing patient
awareness of SHC
P D
S A
Sheffield
Aim – improved
Hand Washing
Sunderland
Aim - Post Dialysis
Weight recording
Manchester
Aim – Increase Ultra
Filtration Definitions and awareness
Global AIM = increase the uptake of shared care in centre based HD patients
It may be better to be depicted more like this - SHOTGUN STRATEGY
Or even this may be too simple and give the impression that a few changes and we are done
We believe that sustainability will come from CONTINUOUS IMPROVEMENT,
Ie not 1, 2 or even 20 PSDA cycles rather a recognition that we are ALWAYS striving for better, Always looking to help and support the patient. Some PDSAs may not influence shared Care greatly but impact some other aspect of care more than expected.
No one comes to work to do a bad job but everyone wants to do the best job they can for themselves and the patients they are coming to work to help.

20. Baseline Research Data - Task Counts
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.

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

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

23. Shared Haemodialysis Care?
Working with healthcare staff
Choosing what, when and how much
Learning at own pace
Offered to all
Shared
Care
Respecting individuals Inclusive not exclusive
Emphasis is on choice - taking part and engaging at a level that suits the patient as an individual.

24. Potential Involvement Cycle
Patient chooses small tasks or part of tasks
“Well that was easy!” “If I can do that, what else can I do?” Others see what I do and think “I could do that to” “I can learn new skills” “I am more than a patient; I have a positive role in my own care” Then the journey starts …
Impact on Quality of Life
Confidence and Self Esteem Increases
The Snowball effect
Desire to do More
Positive Experience of SHC
Interest Generated

25. Tiny Steps make it possible
Unlocking potential!

26. 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.”
Anya de Iongh
Patient leader and self-management coach
2014, King’s Fund
PAUL

27. “You are part of the team looking after you!”
“I want to take control” “some kind of control back over an illness that takes away so much”
“You are part of the team looking after you!”
[Michael Sheffield]
“Doing Shared Care has given me more understanding & control towards my treatment”
[Mike-Hull]
“Taking part has given me back some control, a feeling of self- esteem and achievement “
(Elaine Garnet)
“This programme has given me my life back”
[David Sheffield]

28. Share with us experiences of being involved in your care …..
If good how can it be done more
If bad what could have been done better ?

29. Impact of Shared Haemodialysis Care
Develops patient self-management skills
Can work within any unit to all patients.
Is not a means to force people to dialyse at 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

30. Changing a culture Uptake of change takes time and is variable
= not always straight forward
We have started a movement that we hope to be the norm for all dialysis patients in the future
Uptake of change takes time and is variable

31. Focusing on Sustainability
TRAINING
TOOLKITS
LOCAL
ADAPTATION
WEBSITE /
NETWORKS
TEMPLATES
ROADMAP
CoProduction

32. Creating a Movement
SHAREHD programme is a 2 year programme of 12 trusts
coming together to share ideas and experience
Looking and sharing what works, what does work and why
SHC in many place is not new
This Pgm is built on the Yorkshire & Humber Closing the Gap
Many other initiatives a
BUT – now Shared Care / Person Centred Care is being built into Specss so should be offered to all at a pace and in a way that suits you.
Aim now - part of day to day working – not easy for patients or staff
Creating a movement - is a way of sharing that belief and drawing energy for others – you can see that there are many many people now involved ,
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 we have had many other on our twitter feed.
We want you to join in too……

33. Thank you