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NHS England’sImproving Care Experience ThroughPeople Programme:co-design workshop participant pre-reading

Programme background:

Improving care experience is a priority for NHS England. NHS England has commissioned a research programmeto co-designcritical 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 improvecare 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 Workshop13 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 co-design 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.

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 TheProgramme.

In June 2014, NHS England held aworkshop with leaders who use services(for list of attendees, see Appendix One). The group came together to:

  1. Gain a detailed understanding ofcurrent best practice
  2. Develop options for future developments

The dialogue at this session was captured by NHS England. What participants said has shaped the scopeand design of TheProgramme.

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:

  • 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.

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:

  • 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 theseemerging principles and be mindful of their importance as likely critical success factors. The Programmewill 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 isnot modeling the behaviourthat it would like to see in others around this agenda”

Emerging questions

The group identified a number of questions that remained unanswered and wereimportant 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:

  • 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?
  • 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:

  • 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.”

Participantsshared many actions that they wanted to see. They are themed here.

The Programme will work with a widercommunity 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

  • 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

  • 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
  • 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
  • Createa level playing field - an‘expert patient approach’ with leadership aspect built in
  • Identify good interventions that have recognised and overcomethe 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:

  • 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 co-design’)
  • 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:
  • Involvement in development the vision and ongoing contribution of thought leadershipfrom patients
  • Identifying levers and modelinggood practice
  • Building organisational and individual leadership capability
  • Maximising engagement
  • Model a different way of working within NHS England’sPE team. Dothings differently to the other teams at NHS England – starting with this Programme.

Localorganisations

There was a strong focus on the behaviour of commissioning organisations and less focus on service providers. The group said:

  • Invest in buildingorganisational capability around involving leaders with lived experience
  • Reward and recogniseleaders’ 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
  • 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 localcommissioning process
  • Make better use of existing feedback mechanisms and data

Support for active and emerging leaders

  • 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. Supportboth health care professionals and patient leaders to work together. Recogniseboth 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?

  • 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 Programmeis 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 consideredby Leadership Academy as a ‘patient leadership’ programme
  • Thames Valley has used existing networks to build a programmefor 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 theprogramme
  • NHSParticipation Academy is focusing on supporting patient leaders
  • LambethHealth Watchis 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.

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”
“Move forward by broadening involvement – at NHS E Area Team as well as national level”
“Convene a group of patients and professionals (include clinicians) to discuss how to improve patient experience through leadership; capture what are we learning 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.” / This work will create opportunities for people to engage
inboth the digital space and real world.
It will create a co design team of participants from national and local level, with leaders who use services from all walks of life equal partners and often in the majority. It will involve clinician, commissioners, providers and managers as well as the voluntary sector. It will also involve those who provide support and solutions that aim to create improved care experience through leaders who use services.
Create a shared vision
“Provide clarity about the vision and what engagement is capable of changing; include discussion of culture change” / The Programmewill 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 workthat 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
“Share the learning. Evaluate the programme and share the evaluation” / 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.
Use of social media and webinars will further enablelarge numbers of people to engage in co design and in sharing the emerging learning
Model success
“Use a live project to model e.g. renal pathway. Evaluate. Apply an action research approach; involve people in design of evaluation” / 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, NHS England will be able to build upon what is already working and learnfrom 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: