TP-CKD Learning event

Valuing Individuals – Transforming Participation
in Chronic Kidney Disease
Cohort 2 Learning and Sharing Event
08 November 2016

Welcome and Housekeeping
| 3Transforming Participation in CKD | Cohort 2 Event | 08 November 2016

Programme for the Day
| 4
11:00
- Welcome and Housekeeping
- Aims of the Day and overview of programme to date
11:25 Ice Breaker
11:35
- PAM / PROM / CS-PAM Data
- Cohort 1 Presentations and Experiences
- Q&A Session
13:15 Lunch Break
13:45 - The Importance of Communication
14:05
- Quality Improvement and Change management
- The importance of starting small
14:35
- Group Work – Your Health Survey
- 30-60-90 Day Plans
- Feedback of Implementation Plan
15:50 - Next Steps and Close
Transforming Participation in CKD | Cohort 2 Event | 08 November 2016

Overview of TP-CKD programme to date

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
Context for TP-CKD Programme

We know that…………..
| 8
• People who have the knowledge skills and confidence to be involved in their
health care have:
• Better health outcomes
• Improved quality of life
• Increased independence and control (decision making, informed choice, better
support)
• Increased knowledge and understanding
• Understanding the impact of CKD on the other 95% of life – not just when in clinic
Source: Coalition for Collaborative Care. Personalised care and support planning handbook. NHS England 2015

Many of the behaviours we are asking of people (staff and patients) are
only realised by those with greater levels of knowledge, skills and
confidence ( highly activated)
When we focus on the more complex and difficult behaviours– we
discourage those who have less skills, knowledge and confidence
If we start with behaviours more feasible for staff and patients to take on -
it increases individual’s opportunity to experience success
Why person centred care?

The Passive Patient
| 10
• Healthcare can be profoundly
disempowering
• But most patients want to be
treated as active participants –
as co-producers of health

To a person centred approach….

A developmental scale

What are the questions the TP – CKD programme is asking?
| 13
Can ‘person centred care’ measures be collected routinely
within renal units?
What level of knowledge, skills and confidence do people with CKD
have to manage their own health care – This is known as Patient
Activation
Does somebody who is activated have better QOL outcomes and
clinical outcomes
Can we improve a persons knowledge, skills and confidence with
targeted interventions
Co-Production underpinning the whole programme

Knowledge, skills and Confidence Cube

Patient Activation Measure (PAM) – 13 questions to assess a person’s knowledge, skills
and confidence in managing their own health and healthcare.
Patient Reported Outcome Measure (PROM) – What is really important to you as a
person with CKD
5 questions to assess a person’s overall health. E.g. problems performing usual
activities, self-rating their health by assessing between 0 (worst imaginable
health state) and 100 (best imaginable health state)
11 questions on how bothered you might be by the most common symptoms
renal patients experience.
CS-PAM –To assess how supportive HCP are to patients gaining knowledge, skills and
confidence to self manage
Phase 1 – Measurement with cohort 1

Lessons Learned
| 18
• Involve patients from the beginning – working group
• Clinical champion – patient champion
• Start small and build – QI cycles
• Engagement of whole team
• Leadership
• Different ways of working – volunteers – IT - process

What next……………..Phase 2 Cohort 1
| 19
Use data to understand where you are as a
team
Use it to begin to change behaviours and
conversations
HOW?
We will facilitate workshops + introduce
interventions

What next……………..Phase 1 Cohort 2
| 20
Implementation plan – 30-60-90 day
Develop implementation working group
Engage with larger team in unit
Start measurement in January 2017 – small
cycles

Ice breaker – “I bet you’ve never…?”
| 22
Think about something you have done or experienced that
no one in the room knows or would guess about you.
When everyone has one, share them on your table and
select the most interesting, unlikely or bizarre, and we’ll
share them.
The aim is to move beyond the value judgements we
sometimes make without thinking, and start the day as
equals bringing different qualities and experience to the
event.

• Key aim of TP-CKD: empower patients to take greater
control of their health and wellbeing - leading to better
outcomes
• Clinical teams also have a key role in patient activation, but
they are variable in their level of support for patient
activation: CS-PAM
Aim of TP-CKD

• Aim of CS-PAM: understanding staff attitudes and beliefs to
person centred care within each renal centre with the
intention that once fed back acts as a catalyst for change
• Ten renal centres submitted data as part of cohort 1, with
358 staff members completing the survey
CS-PAM

CS-PAM: clinical staff demographic results
| 26
Staff Number % Staff Number %
Number of staff 287 Gender
Male 60 20.9
Staff type Female 200 69.7
Doctor 50 17.4 Missing 27 9.4
Nurse 148 51.6 Ethnicity
AHP 45 15.7 White 182 63.4
Other 27 9.4 Black 9 3.1
Missing 17 5.9 Asian 49 17.1
Age group (years) Other 12 4.2
<=24 5 1.7 Not applicable 4 1.4
25-34 46 16.0 Missing 31 10.8
35-44 96 33.4 Regularly work with
45-54 88 30.7 long term conditions
55+ 25 8.8 Yes 255 88.9
Missing 27 9.4 No 5 1.7
Years in practice Sometimes 10 3.5
0-5 26 9.1 Missing 17 5.9
6-10 42 14.6 Clinical setting
11-15 41 14.3 Within acute hospital setting 199 69.3
16-20 38 13.2 Outside hospital setting 36 12.5
21-30 70 24.4 Other 18 6.3
30+ 22 7.7 Missing 34 11.8
Missing 48 16.7

CS-PAM: Percentage of staff per activation level

CS-PAM: Activation level by staff type and age group

CS-PAM: Activation level by clinical experience & gender

CS-PAM: Renal centre and staff activation level (%)

• 30% of staff highly activated
• Wide range of individual CS-PAM scores: 22.6-90.6
• The variability in support for patient activation also reported in other studies
• The mean activation score of 72.0 (range 22.6-90.6, median=71.6) was
similar to results in the NHS England CS-PAM report, indicating that clinical
support for patient activation has not changed substantially over the last 6
years
CS-PAM: Summary findings

• There was evidence of a significant difference in the support for
patient activation between genders and staff type: female staff
were more activated than males, nurses and AHP were more
activated than doctors
• There was no significant difference found between activation
and age and years’ clinical experience
• Independent actions and judgements by patients were
supported to a lesser degree by staff
• Least supported was patients seeking information
independently
CS-PAM: Summary findings - continued

PAM and PROM
| 33
The TP-CKD measurement work stream developed a tool known
as ‘Your Health Survey’ using previously validated surveys:
•5 questions on overall health (EQ-5D-5L)
•17 questions on symptoms (iPOS-S renal)
•13 questions on the ability of the patient to manage their
health (Patient Activation Measure (PAM))
The PAM is calculated as a score which corresponds to a PAM
level

PAM levels explained
| 34
PAM level 1: Disengaged and overwhelmed. Individuals passive & lack self-
confidence, knowledge low, goal-orientation weak, adherence low.
PAM level 2: Becoming aware but still struggling. Have some knowledge but large
gaps remain, believe health is largely out of their control
PAM level 3: Taking action. Individuals have key facts, are developing self-
management skills and are goal orientated.
PAM level 4: Maintaining behaviours, adopting new behaviours but may struggle in
times of stress and change. Maintain a healthy lifestyle.

PAM/PROM patient demographics
| 35
Patient demographics Number Percentage
Assistance with survey completion
Own 619 58.8
Staff 219 20.8
Friend/relative 160 15.2
Unknown 55 5.2
All 1,053 100.0
Completion of survey
At home 255 24.2
Renal unit 643 61.1
Clinic 107 10.2
Unknown 48 4.6
All 1,053 100.0
Age distribution
18 to 24 27 2.6
25 to 34 56 5.3
35 to 44 80 7.6
45 to 54 162 15.4
55 to 64 217 20.7
65 to 74 234 22.3
75+ 274 26.1
Unknown 3 0.3
All 1,053 100.0

PAM level

Patient activation by renal centre

PAM questions

Patient symptoms
| 39
Prevalence of patient symptoms determined as the proportion of patients with moderate,
severe or overwhelming symptoms, with the 5 most prevalent symptoms:
•58% of those surveyed experienced weakness and lack of energy
•49% of patients surveyed reported having poor mobility
•39% of those surveyed experienced pain
•38% of those surveyed reported difficulty in sleeping
•36% of those surveyed experienced shortness of breath

Patient symptoms by age group

Overall health

Summary findings PAM/PROM
| 42
• Many people living with CKD completed the survey, more than half doing it
themselves, without needing help from others. This is a promising starting
point for using the survey on a wider scale.
• One in three patients reported to feel overwhelmed by their illness, and
preferred that their doctor to make the decisions about their health.
• At the same time, a similar proportion said that they had the knowledge,
skills and confidence to be part of their health care team.

Summary findings PAM/PROM - continued
| 43
• Many participants felt they lacked the confidence to work out solutions when new
health problems would arise, and did not feel able to maintain lifestyle changes.
• More than half of all people who completed the questionnaire reported to be
bothered by lack of energy.
• Poor mobility, pain and difficulty sleeping were also very common.
• Half of all participants had at least moderate problems with mobility and with
carrying out their daily activities.

Lessons learned from cohort 1
| 44
• Response rates for CS-PAM were low: varied from 3% to 30%, overall response rate of 14.3%
for all staff
• Respondents completing the survey are self-selective: don’t know if respondents are
representative of the staff/patients in each renal centre and staff in the wider kidney
community
• CS-PAM: big differences in response rates between renal centres
• There is likely biases: possibly be more towards respondents that are activated and staff that
support person centred care completing survey

Lessons learned from cohort 1 - continued
| 45
• Feedback of CS-PAM results to individual staff members severely hampered by staff not
providing identifiers
• Due to low numbers of staff participating in some renal centres, detailed centre level reports
only possible in 2 centres (CS-PAM)
• The problem with small numbers:
•Could result in the identification of respondents
•Limits generalisability of survey results at centre level
• An increase in the number of respondents at centre level is needed to report meaningful
statistics back to centres and for results to useful in affecting clinical change

Lessons learned from cohort 1 – small numbers
| 46
Demographic characteristics
Centre X Centre X + 6
Number % Number %
All staff 14 20
Age group (years)
<=24 1 7.1
25-34 3 21.4
35-44 4 28.6
45-54 4 28.6
55+ 1 7.1
Missing 1 7.1
PAM level
High 4 28.6 8 40.0
Low 6 42.9 6 30.0
Medium 4 28.6 6 30.0

Conclusion
| 47
• It is possible to routinely gather clinician support for patient
activation as well as a patient’s level of knowledge, skill and
confidence, quality of life and experience of healthcare using
data collection methods
• Thanks you for listening

TP-CKD Cohort 1 Experiences
Bradford
Presented by Dr Ramla Mumtaz ,Clinical Staff Lead &
Peter Forrest ,Patient Lead

 Bradford’s identified pilot survey patient group was “Haemodialysis patients”. Surveys
completed in January-February 2016.
 Bradford Project Strengths ;
 A. Successful 50: 50 partnership (Patient and Staff managing project) - 3-4 monthly progress
review meetings
 B. Local press release, media coverage and utilization of Trust wide available resources.
 C. Targeted use of staff and patient group meetings.
 D. Timely discussions of challenges and progress reports.
 Challenges faced and dealt by Team Bradford ;
 A. Non-engagement (Analysis done ,barriers identified both for staff and patients)
 B. IT , Admin and Clinical support Co- ordination ( support identified and co ordinated)
 C. Staff and Patient Coaching initiatives ( coaching session planed, first one by RR on 25/11)
 D. Sustainability ( to discuss after CQUIN Completion)

Implementation

 Pilot data returns from Renal Registry for 148 patients , transferred to BHLY (vital
data)
 Available to use during clinical interactions. Patient informed of their activation level
during consultations.

 Staff acknowledging it in care plans and are trying to agree shared goals based on
activation level ranging from low to high , 1-4.
 Local pilot data provided by Renal Registry was analysed by Trust C QUIN team to
take up - C QUIN scheme offered by NHS England.
Data Handling

CQUIN ; Activation System for Patients with Long Term Conditions Scheme Name:
GE2: Activation System for Patients with Long Term Conditions (LTCs)
Duration ; April 2016 to March 2018,
Focus Group ; Pre- Dialysis, Failing Transplant ,CKD4- 5 Patients
Target Number ; 500 patients.
Our Next Step( in progress)

Newcastle
Presented by Helen Ritson (Young Adult Kidney Care Co-ordinator)
and Rachel Fraser (Renal Pharmacist)

• Education of staff
• Intimidating ? Too much extra work
• Finding someone to take ownership
• Timing of conference calls
• Frequency of repetition
Challenges

• Learning and sharing events
• 30-60-90 plan
• Patient support
• Rachel Gair
• Feedback from Sarah about progress
Help & Support

| 57
Young Adult Patient Group
• 58 patients
• Aged 18-30
• Young adults publicised via closed groups on Facebook, Twitter
and Instagram to raise awareness
• Surveys given to face-to-face or via post
• Response rate:
• Almost 100% face-to-face (1 patient refused)
• 14/18 post

| 58
Transplant Patient Group
• > 730 patients
• Posters and leaflets in clinic
• Repatriation project
• Surveys given at outpatient clinic visit
• 20 patients each week
• Response rate good

| 59
Next Steps
• Intend to repeat after 6 months
• Practicalities
• Roll out to other patient groups
• Using experience from Young Adult/Transplant groups

• Good response rate to PREM
• MDT task and finish group
• Involvement from TKPA volunteers
• Commitment from all staff (whole unit involvement)
PREM

Thank you

Derby
Presented by Peter Naish & Joanna McKinnell

> Developing an implementation working group – How you did it, who
it consists of and how you use reflection at end of each meeting. The
importance of the clinical/patient champion role.
> Development of a patient video
>How you engage the wider team and keep the momentum going
Development of Working Group
Transforming Participation in CKD | Cohort 2 Event | 08 November 2016 | 63

• Dissemination across whole workforce by key members with TP-CKD group
• Verbal and email reminders
• Received results in private and confidential envelopes individually named
• Handed out in person and offered the opportunity to discuss the results
• Surprise, competition, debate around questions, discussion over meaning
• Delay in incorporating into appraisal multi factorial
CS-PAM

• Low clearance clinic, real time
• Then rolled out to PD
• Spread sheet useful especially for pd population, allowed targeted
intervention in groups flagged up highly in depression / anxiety based
questions
• Concern over more widespread use before using patient view feature properly
• Communication to patients of their results and what we are doing with them
• Very successful group, clear and united vision...... culture change
• Patient video example.
Small Cycles of Change – The Process

Kings College Hospital
Presented by Eleri Wood & Agnes Gogognon

Getting Started
| 67
Challenges to implementing survey How did we overcome them?
Competing demands = lead only able to give
relatively small amount of time/resources
•Everyone else having same problem, but being
less invested, and geographically separate
•Fall off of patient and clinical volunteers who
came to initial event
• Difficulty engaging lots of patient volunteers in
absence of active KPA
Patient reluctance to complete the form
•Competing with other PREM/PROMs.
•Disconnect between completing the survey and
getting results / changing management
• Start small
• Aim to establish practice in areas
where similar data already
collected before spreading
• Patient volunteer meeting clinicians
• Patient volunteer engaging with
and assisting patients
• Replacing or aligning with other
measures
• Using posters, leaflets

 What is the role of patient volunteer?
Introducing the survey to patients, encouraging, assisting to complete, informal
peer support and signposting, provided positive role model.
Advocating for the programme to clinicians
Motivating clinician leads
 How does this work and what lessons can be shared?
Initially volunteer and clinician working together
Short frequent visits and contact
Over time volunteer familiar to nurses and patients in the area
We plan to repeat this in each clinical area to engage the wider
team and gain the spread
Role of Patient Volunteer

The importance of communication
for TP-CKD
Annie Taylor

“You cannot not
communicate”
8 November 2016 | 72
www.thinkkidneys.nhs.uk/ckd

“You cannot not
communicate”

1. Your team and Trust
2. Your patients
3. The TP-CKD team
Communication – who?

Why?
 To help people understand
 To increase involvement and engagement
 To raise awareness and the profile of your work
1. Your team and Trust

Why?
 To help them understand why you’re doing this
work
 To increase involvement and engagement
 To encourage to take part
 To influence others
 To make change and improvement happen
2. Your patients

Why?
 To help and support you
 To increase awareness of the programme and
your part in it
 To encourage others to take part
 To showcase this work to the NHS and beyond
3. The TP-CKD team

 Plan how you are going to do it
 Talk to people
 Create your messages and get them out
 Provide regular updates and feedback to people
 Use the resources you have
 Get help if you need it
How to communicate…..

Communication…
Make use of
resources
available –
poster, leaflet,
guidance,
connections,
people,
Find people
who will help
you with this –
someone from
your team,
your Trust
comms team,
me (!)
Important
message from
C1 – “involve
and engage
with everyone
– the better
the comms
the better it
all works”
Essential
element of
comms -
feedback to
everyone
involved

Keep a focus on
communication –
your success
depends on it…..

Annie Taylor
E anniemtaylor331@gmail.com
T 07793 608286

Change Model for the Programme
Ron Cullen

• Peer Assist from experts helps you refine your plans and
your overall strategy
• After Action Review – Helps you make the small adjustments
as you go along
• Peer Review helps us all reflect and capture the learning
• Underpin it all with measurement and and co-production to
keep it real and inform decisions
A Simple Model of Change and Sharing

• Have a clear idea of what you want to achieve
• Develop a set of plans that describe what you are going to do and
how you will do it
• Identify a peer assist team that will be able to challenge your
plans. This could include
• People who have already done it
• People with expertise from inside or outside your organisation
• IT, etc COMMS, Project Management
Peer Assist

• Conduct the session
• Identify a facilitator – role is to keep the workshop open and challenging
avoiding defensiveness and encouraging learning
• Identify a scribe
• Team present their initial plans
• Correct change plans as you go
• Come out with a finalised plan
• Run for no longer than 2 hours
Peer Assist

After Action Review
Learning, doing, testing, checking,
learning some more….

• Learning whilst doing: don’t wait until the end of the project
• A simple process for continuous improvement: learn quickly
and adapt in order to improve
• Introducing the discipline of reflection and learning
• Team building: opportunity for sharing of insights, strengths
and weaknesses of event as equals. Team learning & building
trust.
Why do it?

When do you hold a AAR?
| 88
• Events suitable for AARs have a beginning and end, a
purpose and some metrics on which performance can be
measured.
• After the initial pilot – hold one straight after a clinic where
health surveys were handed out
• After a working group meeting
• After each 30-60-90 days of implementation plan
• You can decide how often!

Hold the AAR immediately
| 89
• Participants still available
• Memories fresh
• Learning can be applied straight away, even on the next day
• Enables build up of knowledge

Create the right climate
| 90
• Everyone in the event participates on an equal footing
• Completely free to challenge and comment on actions
• Climate of openness and commitment to learning – they are
not critiques or personal performance evaluation
• No spectators or management oversight but sometimes
might require a facilitator

How do AARs work?
| 91
• It is a pencil and paper or flip chart exercise
• Take no more than 20 minutes
• Open and honest meeting
• Answers 4 questions:
• What was supposed to happen?
• What actually happened?
• Why were there differences?
• What can we learn from that?

A personal AAR
| 92
• Take a few moments and reflect on something that
happened yesterday – imagine it – remember what you said
and how you feel
• Now answer the 4 AAR questions
• What was supposed to happen?
• What actually happened?
• Why were there differences?
• What can you learn from this?
Just imagine what a team can achieve with a similar reflection

| 93
What were the objectives of the activity?
•All share understanding of what was supposed to happen
•It does require a clear, well communicated and unambiguous
objective and plan.
•Everyone write down on a piece of paper and feedback to
group or capture on flip chart.
What was supposed to happen

What actually happened – the ground truth
| 94
• Vital part of process – don’t rush it
• Identify problem not culprit
• Establish the facts and encourage personal disclosure – can
‘unblock’ the process
• Challenge people if they start moving on to opinions

Compare plan with reality
| 95
Why were there differences and what can we learn?
•Successes and shortfalls discussed
•Action plans put in place to sustain successes and improve
shortfalls
•People learn from differences in perspectives
•May need to repeat the question – why was this? To get to
underlying reasons

Recording an AAR
| 96
• Generate summaries of learning points
• Primarily learning for the team
• Basis for a broader learning programme – ‘is there anyone
else with whom we could share what we’ve learned’
• Capture a record of key learning points and agreed actions &
then refer to as a reminder at beginning of next activity.

Role of the Person Centred Care Facilitator
| 97
• Monthly calls with TP-CKD lead
• Attend working group meetings
• Support teams with resources and information
• Capture learning – ‘what have been challenges and what has
worked’

Peer Review
| 98
• This mirrors the peer assist event but pulls together the learning
• Identify key results and learning points and present them
• Identify a group that includes
• Stakeholders you may wish to engage and spread
• Experts who can challenge
• People who can commit resources to continue
• Capture the overall learning on a series of agreed templates to share
• Plan for the next phase

Measurement
| 99
• We measure for many reasons
• Judgement e.g. UKRR reports – Test against standards mainly outcomes some
process
• Research – To prove a change in practice has improved before and after
measurement usually outcomes
• Improvement – Need rapid feedback mainly measure processes and feedback
rapidly
• Remember to be clear what you are trying to achieve
• Design measures to measure this
• Remember to put in balancing measures eg increased time

How does this link with AAR
| 100
Measure
Time
AAR

Group Work
30-60-90 Day Plans
Implementation Plan

30-60-90 Day Plan Instructions
| 102
We would like to see you develop a 30-60-90 day plan based on a Quality
Improvement approach – starting with small cycles of change and spreading.
Please use the learning shared from cohort 1 to develop these plans
You will find examples of the 30-60-90 day plans from Cohort 1 on your table to
offer ideas. Please also see the After Action Learning tools.

Example of a 30-60-90 Day Plan
Within… We want to achieve… We will achieve this by…
30 Days Engage about PAM, CSPAM & PROM
Who?
By whom?
How?
60 days Pilot PAM, CSPAM & PROM
Who?
By whom?
How?
90 days Roll out routine use of PAM, CSPAM and PROM
Who?
By whom?
How?

Within… We want to achieve… We will achieve this by…
30 Days
60 days
90 days
30-60-90 Day Plan Template

Feedback of Implementation Plan
| 105
We would like each renal unit team to share 5 minutes feedback at the end of
the session covering the following:
•What group of patients do you propose starting with?
•What do you see as challenges?
•How will these be overcome?
•What do you have in place that you can develop further – links with KPA,
patient + clinical champion, working group etc.
•What support would you like from TP-CKD team?
•What’s your key message to take back to your team following this event?

Richard Fluck
Nephrologist, Derby and Co-Chair
of TP-CKD Programme
Richard.fluck@nhs.net
Jonathon Hope
TP-CKD Patient Co-Chair
jonathonhope@msn.com
How to find out more
Karen Thomas
Head of Programmes
UK Renal Registry
Karen.thomas@renalregistry.nhs.uk
Sarah Evans
TP-CKD Programme Coordinator
UK Renal Registry
Sarah.evans@renalregistry.nhs.uk
Rachel Gair
Person Centred Care Facilitator
UK Renal Registry
Rachel.gair@renalregistry.nhs.uk
Ron Cullen
CEO
UK Renal Registry
Ron.cullen@renalregistry.nhs.uk
Contact Think Kidneys
www.linkedin.com/company/think-kidneyswww.twitter.com/Thin
www.youtube.com/user/thinkkidneys
www.slideshare.net/ThinkKidneys
www.thinkkidneys.nhs.uk/CKD

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