NHS England’s Improving Care Experience Through People
Programme: co-design workshop participant pre-reading
Programme background:
Improving care experience is a priority for NHS England. NHS England has commissioned a
research programme to co-design critical success factors and how best to promote and support
‘leaders who use services’ to play a prominent role in improving care experience.
The aim is to answer the question:
‘What are the critical success factors that need to be in place so that leaders who use
services can maximise their impact on improving care experience?’
The definition of leadership is broad. It includes all those already acting as leaders to improve
care experience.
The definition of critical success factors is also broad and includes: policy context and drivers;
organisational receptiveness; individuals’ capacity and capability; research and current
practice; funding and key outcome measures.
This programme will apply co design principles and practices to policy development.
By working with leaders who use services, commissioners, providers and policy makers
(including NHS and voluntary sector), it will build consensus and a shared vision of how people
can work with the NHS to transform and improve care experience. It will map the current
picture; identify gaps and stimulate policy and best practice exchange.
We are embarking on this journey and you are involved in phase one of the programme.
This is consists of two co design conversations:
1. A Co-design TweetChat 10 NOVEMBER 20.00 – 21.00 #PL4EC
2. A Policy Co-design Workshop 13 NOVEMBER face to face in Smethwick, Birmingham
with around 50 participants; of whom at least 50% will be leaders who use service
Those who contribute to either of these co design sessions will become part of a powerful codesign team who will continue to be involved throughout The Programme in shaping the
recommendations to NHS England. The findings from these two co design conversations will
be published as an initial interim report.
At the end of this research, NHS England will respond to co-designed proposals and formulate
its thinking and policy based on what participants have told NHS England matters.
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Why do we need this programme now?
A lot of thinking has already been done at NHS England and with leading edge practitioners in
this field to scope and frame The Programme.
In June 2014, NHS England held a workshop with leaders who use services (for list of
attendees, see Appendix One). The group came together to:
1. Gain a detailed understanding of current best practice
2. Develop options for future developments
The dialogue at this session was captured by NHS England. What participants said has shaped
the scope and design of The Programme.
This paper presents a thematic analysis of a workshop transcription provided by NHS England.
It uses the language and words recorded in the transcription. It is themed under the following
headings:
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What do we mean by ‘patient leadership’?
Guiding principles and critical success factors
Current system behaviour
Emerging questions
Proposals for action (national and local)
The assets and best practice we can build on
‘You said, We did’
What do we mean by ‘patient leadership’?
Participants offered a range of definitions of patient leadership:
“Unleashing patients to have more power over decisions being made”
“There is a difference between patient leaders and someone representing a patient”
“It’s about leadership – regardless of whether its management, a patient, etc”
“How equal patients are in the partnership i.e. co-production and co-design rather than a
person’s position in the ‘structure’ of the NHS e.g. patient leader on the board”
“Patient leaders live with change through illness. They want to influence, change things and
get involved”
“Patient leaders are about strategy. Patients need to leader themselves before leading
others. Self-management leadership is part of ‘patient leadership’”
“Experience and ability of being a ‘patient leader’ comes from being a ‘patient’ and having
this expertise/experience”
“Patient is situational and contextual. Patient leaders who have local experience and skills
need to accept their illness. Patients can coach patients”
“ Patient leadership is about engagement and thought leadership – not patient experience”
The group did not reach a consensus on a shared definition.
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A consensus statement and typology of leadership contributions is something The Programme
will seek to co design with those involved in driving change.
Guiding principles and critical success factors
“ You see the world differently by looking through a different lens; by seeing care through the
eyes of patients”
Participants identified a number of principles and critical success factors to support
acceleration of this agenda. They were:
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Being clear about the uniting purpose of this work; to influence and improve the quality
of care for people and families
Achieving senior manager buy in at both NHS England and local level and recognition
that this work is key to addressing NHS’s current challenges. Effective patient
leadership could break through systems, structures and dismantle the current often low
impact engagement structures
Understanding this work is about changing culture and building organisational
capability and capacity
Designing the principles for their leadership role with patients
Patient leaders having equal status alongside clinical leaders and others; ‘being
regarded simply as leaders’
In light of patient leaders’ preference to be described simply as leaders, this is the term used in
this paper.
The Programme will build on these emerging principles and be mindful of their importance as
likely critical success factors. The Programme will involve a wider group in co-creating a set of
guiding principles for the involvement of leaders in improving care experience.
Current system behaviour
There was little discussion recorded on how the system is currently behaving. Most of the
discussion was on how the system could and should behave. People said:
“The NHS is still talking about others doing this; rather than it doing something itself”
“NHS England is not modeling the behaviour that it would like to see in others around this
agenda”
Emerging questions
The group identified a number of questions that remained unanswered and were important to
shaping this work. These are presented here as questions for NHS England and the
commissioning and service delivery system and questions for leaders themselves:
For NHS England and the NHS commissioning and service delivery system:
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What does The NHS want? What is the shared vision?
How should NHS England model involving leaders to improve patient experience?
How do we make this approach accessible and not tokenistic?
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Should we be changing the way that engagement is done and working in a different
way?
How do we measure the benefits (and our progress) around improving patient
experience and engagement?
What are the best levers to influence improved patient experience? How do we best
leverage change?
For leaders themselves:
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Where do patient leaders meet expert patients?
Does ‘self leadership’ come before ‘self-management’?
Where do you start with finding common ground when you’ve been on several different
types of course on patient leadership?
The Programme will seek to answer many of these questions and co design solutions.
Proposals for action (national and local)
“ We need to start at the top of the (NHS) structure and look at how we can make a positive
difference.”
Participants shared many actions that they wanted to see. They are themed here.
The Programme will work with a wider community of stakeholders (co design team) to generate
further ideas; prioritise and co design a small number of game changing high impact actions
that NHS England can focus on. These may include some of the recommendations made here:
NHS England’s commissioning work
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Invest in and prioritise building NHS England’s organisational capability to involve
leaders in its commissioning work
Reward and recognise leaders’ time and contribution: equal status; payment for
attendance at meetings that overcomes the fact that those on benefits lose entitlement
if they engage in paid work. This is a ‘quick win’
Take a longer-term view within NHS E’s commissioning. Change the way that
engagement is done; working in a different way i.e. health professionals engaging
patients at the start of the exploration; starting with a blank sheet rather than coming up
with an approach and then asking patients to shape - co-design rather than consultation
Create shared experiences – break down the ‘them and us’ feeling; avoid ‘them and us’
situations
NHS England’s system leadership
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Lead by example; involve leaders in NHS E policy and strategy development; work with
patients to review plans
Support development of leaders’ involvement within clinical commissioning groups
(CCGs), health and well being boards, Healthwatch, patient participation groups,
support groups at local level
Support development of leaders’ involvement in Monitor, Care Quality Commission
Put in place policy that achieves a wider influence on the NHS agenda - shared
leadership that support improving patient care
Issue guidance around growing NHS organization to build and utlise capacity of leaders
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Put in place guidance for CCGs, NHS England area teams to support involvement of
leaders: principles, vision of how leaders through experience can provide thought
leadership, advice on making it happen; make it mandatory to for people who use
services to be on board; ‘no decision can be made without patient leaders’
Incentivise change in system behaviour through funding
Create a level playing field - an ‘expert patient approach’ with leadership aspect built in
Identify good interventions that have recognised and overcome the fact that ‘culture
eats strategy for breakfast’
Patient Experience (PE) and Patient and Public Voice (PPV) Teams (national and local)
There was wide ranging discussion about how the system functions of PE and PPV are
organised. Their separation is common locally and mirrored at National level. Participants
proposed:
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Join up PPV ‘engagement’ work and PE teams. They are in effect working on the same
agenda
Clarify definitions: ‘what is PE and what is it not?’ and ‘Is PPV about new ways of doing
engagement?’
Make PE leads responsible for improving patient experience in partnership with leaders
with lived experience (described as ‘an extra tier in PE that includes leaders who codesign’)
Make PPV teams who can lead on ‘modeling the doing’
Build capability for both PE and PPV
Work with leaders to influence change in engagement approach and to improve patient
experience
Focus on:
o Involvement in development the vision and ongoing contribution of thought
leadership from patients
o Identifying levers and modeling good practice
o Building organisational and individual leadership capability
o Maximising engagement
Model a different way of working within NHS England’s PE team. Do things differently to
the other teams at NHS England – starting with this Programme.
Local organisations
There was a strong focus on the behaviour of commissioning organisations and less focus on
service providers. The group said:
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Invest in building organisational capability around involving leaders with lived
experience
Reward and recognise leaders’ time and contribution: equal status, pay for services,
attendance at meetings, etc. This is a ‘quick win’
Encourage a longer term view within commissioning
Change the way that engagement is done. Work in a different way i.e. health
professionals engage patients at the start of the exploration; start with a blank sheet
rather than coming up with an approach and then asking patients to shape = co-design
rather than consultation
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Encourage change in the way strategic clinical networks, CCGs, patient participation
groups and support groups work; support health and wellbeing boards to learn with
citizens
Create shared experiences – break down the ‘them and us’ feeling; avoid ‘them and us’
situations
Create citizens auditors who are embedded in local commissioning process
Make better use of existing feedback mechanisms and data
Support for active and emerging leaders
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Recognise that being a leader may be outside people’s comfort zone. Provide the
opportunity for people to talk together about what being a leader means; how they feel
about it and to learn and develop together
Provide training, development and coaching programmes for patient leaders. Core
competencies include: driving innovation, change management, influencing skills
(diplomacy) and applying design principles
Create a payment mechanism for leaders that overcomes the fact that those on benefits
can lose entitlement if they engage in paid work
Open up engagement in leadership work beyond white, retired, middle-class people.
Target people of all ages to get involved
Understand that effective leadership often depends on positive relationship with
clinicians. Support both health care professionals and patient leaders to work together.
Recognise both may need training to enable joint working
Support people with lived experience to become trainers of health and care staff around
patient experience
Market the ‘brand’ to CCGs; sell the benefits
What assets and best practice can we build on?
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Health Watch has all key organisations involved. Think about how patient engagement
can be developed within Health Watch
Care Quality Commission uses experts through experience as part of regulation and
has invested heavily in this. Involve Professor Mike Richards
Midland and East Patient Leadership Programme is well developed
NHS Leadership Academy runs an ‘Empowering and Leading Community
Programme’. This programme gets people together for 5 days, using an acid base
approach. It’s about people learning together. The programme has been evaluated. It
is not considered by Leadership Academy as a ‘patient leadership’ programme
Thames Valley has used existing networks to build a programme for local GP
participation groups. A hierarchy model, it involves working on very small pilot of 20
people - a mixture of health professionals and patients - and is supported by Thames
Valley Strategic Clinical Network and University of Oxford. It builds on examples outside
of health, including BMW. The Leadership Academy is evaluating the programme
NHS Participation Academy is focusing on supporting patient leaders
Lambeth Health Watch is undertaking an appreciative inquiry to inform commissioning
Disability assessment for partially sighted people is in place.
People felt that existing initiatives led by NHS E i.e. Participation Academy and Leadership
Academy needed to be more joined up and think more broadly about including leaders who
use services their programmes.
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The Programme will build on this intelligence and will extensively map current best practice –
nationally and internationally.
You said, we did
Participants recommended a number of next steps. NHS England listened and The Programme
design has responded to these. The ways in which recommendations will happen are captured
below:
You said
We did
Engage widely
“Start a LinkedIn Group; re-establish existing
group”
This work will create opportunities for people to engage
in both the digital space and real world.
“Move forward by broadening involvement – at It will create a co design team of participants from
national and local level, with leaders who use services
NHS E Area Team as well as national level”
from all walks of life equal partners and often in the
majority. It will involve clinician, commissioners,
“Convene a group of patients and
providers and managers as well as the voluntary sector.
professionals (include clinicians) to discuss
It will also involve those who provide support and
how to improve patient experience through
solutions that aim to create improved care experience
leadership; capture what are we learning
through leaders who use services.
about how we work together”
“Involve organisations that could be providers
of support to explore how they can work as
partners to make change happen.”
Create a shared vision
“Provide clarity about the vision and what
engagement is capable of changing; include
discussion of culture change”
The Programme will co design a shared vision in both a
digital co design session (10 November) and in the real
world (13 November). If you are reading this, it is
probably because you are participating in one of these
sessions!
The shared vision will determine the search for good
practice and shape thinking on future pilots. Co design
will also produce a shared definition and typology for
leadership work that is improving care experience
amongst those who use services
Apply co design; lead by example
“NHS England needs to lead by example:
modeling, influencing the agenda – co
designing the changes with leaders and other
stakeholders”
This Programme will apply best practice in co design and
will provide an exemplar of NHS England working in a
very different way to design a change strategy with those
who can make change happen at the front line.
Share learning
This Programme will provide significant insight and
learning. Two interim reports and the final report will be
shared widely over the next 6 months, including through
social media and through the networks of the co design
team, whom are expected to number several hundred
people.
“Share the learning. Evaluate the programme
and share the evaluation”
Model success
“Use a live project to model e.g. renal
pathway. Evaluate. Apply an action research
approach; involve people in design of
Use of social media and webinars will further enable
large numbers of people to engage in co design and in
sharing the emerging learning
Pilots are likely to be the next stage of The Programme;
once this initial discovery and co design phase is
complete.
By scoping existing good practice widely at the start,
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You said
We did
evaluation”
NHS England will be able to build upon what is already
working and learn from The NHS and other sectors at
home and abroad before investing in pilots. It may be that
some parts of the system are already working very close
to the defined vision – and if so, a small investment of
support and encouragement could help those at the
leading edge to fully realise their ambition. This would
pay great dividends and make the most of NHS England
investment.
For more information about this work, contact:
EY: Dr Anita Goraya 07552 283081 email AGoraya@uk.ey.com
Experience Led Commissioning: Georgina Craig, Tel: 07879 480005 Email:
georgina@gcraigassociates.co.uk
NHS England: David McNally Tel: 07887 501375 Email: davidmcnally@nhs.net
Appendix One: attendees NHS England Patient Leadership Programme Scoping
Meeting, 26 June 2014
External to NHS England:
Trevor Fernandes, Patient Leader, Centre for Patient Leadership
Dominic Makuvachuma-Walker, Patient Leader, Centre for Patient Leadership
Karen Maskell, Patient Leader, Centre for Patient Leadership
Rick Bolton, Family Carer and CEO of Charity Izzy’s Busy
Steve Sharples, Patient Leader, NHS England
NHS England:
Julie Kerry, Assistant Director Patient Experience, Thames Valley Area Team
Emma Robinson, Patient Experience Lead, Thames Valley Area Team
Paulette Johnson, Delivery Support Manager, Patient Experience, NHS England
David McNally, Deputy Director, Patient Experience, NHS England
Louise Fowler, Improvement Manager, Experiences of Care Team, NHS Improving Quality
Mary Simpson, NHS England
Sian Huszak, NHS England