engagement project final report main body final v3...6! velindre...

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Velindre NHS Trust Transforming Cancer Services in

South East Wales

Strategic Outline Programme Engagement Project Final Report

June 2015

2 Velindre NHS Trust TCS SOP Engagement Project Report

Table of contents Executive summary ................................................................................ 5 1 Introduction .......................................................................................................................... 5 2 Strategic Outline Programme objectives .................................................................. 5 3 The engagement project .................................................................................................. 6 4 The emerging themes for the Trust ............................................................................ 6 4.1 The role of the Trust Board on managing scope and expectations ........... 8 4.1.1 Leadership ........................................................................................................................... 8 4.1.2 Geographical scope .......................................................................................................... 9 4.1.3 Pathway scope ................................................................................................................... 9 4.1.4 Governance ......................................................................................................................... 9 4.1.5 Expectations and engagement ................................................................................. 10

4.2 The role of the Programme Board in scoping the practicalities of implementation ........................................................................................................................ 10 4.2.1 Information and IT ....................................................................................................... 10 4.2.2 Communication and networks ................................................................................ 11 4.2.3 Partnership and collaboration ................................................................................. 11 4.2.4 Equity ................................................................................................................................. 11 4.2.5 Maintaining patient confidence and trust in the new service model ..... 11

4.3 Next steps for engagement ...................................................................................... 12 4.3.1 Ensuring alignment between the SOP and strategic improvement in cancer services across Wales ................................................................................................... 12 4.3.2 Building a formal engagement programme ....................................................... 12 4.3.3 Equipping staff with the skills and support to engage .................................. 13

Engagement Project Detailed Report ................................................... 14 5 Introduction ........................................................................................................................ 14 5.1 Objectives of the Strategic Outline Programme ............................................. 14 5.2 Objectives of the engagement project ................................................................. 15

6 Process overview .............................................................................................................. 16 6.1 Process summary ......................................................................................................... 16 6.2 Planning and design ................................................................................................... 16 6.2.1 Engagement process co-‐design ............................................................................... 16 6.2.2 Stakeholder analysis and mailshot invitations ................................................. 16

6.3 Experience Based Design (EBD) workshops ..................................................... 17 6.3.1 Background to the EBD methodology .................................................................. 17 6.3.2 The EBD workshops in outline ................................................................................ 18

6.4 Accelerated Design Events (ADE) ......................................................................... 19 6.4.1 Background to the ADE methodology .................................................................. 19 6.4.2 ADE workshops in outline ......................................................................................... 20

6.5 Other engagement activities ................................................................................... 22 7 The emerging themes and their implications for the SOP .............................. 23 7.1 The challenge for the Trust ..................................................................................... 23 7.2 Key themes – managing scope and expectations ........................................... 24 7.2.1 Leadership ........................................................................................................................ 24 7.2.2 Geographical scope ....................................................................................................... 25 7.2.3 Pathway scope ................................................................................................................ 25 7.2.4 Governance ...................................................................................................................... 26 7.2.5 Expectations and engagement ................................................................................. 26

7.3 Key themes – practicalities of implementation .............................................. 27 7.3.1 Information and IT ....................................................................................................... 27 7.3.2 Communication and networks ................................................................................ 28 7.3.3 Partnership and collaboration ................................................................................. 28 7.3.4 Equity ................................................................................................................................. 29 7.3.5 Maintaining patient confidence and trust in the new service model ..... 29

8 Detailed insights from the engagement events ................................................... 31

Velindre NHS Trust TCS SOP Engagement Project Report 3

8.1 Experience Based Design .......................................................................................... 31 8.1.1 Positive feedback ........................................................................................................... 31 8.1.2 Areas for improvement .............................................................................................. 31

8.2 Design Rules themes from the ADEs .................................................................... 33 8.2.1 Design rules from the patient perspective ......................................................... 34 8.2.2 Design rules from the carer’s perspective .......................................................... 35 8.2.3 Design rules from the GP’s perspective ............................................................... 35 8.2.4 Design rules from the Secondary Care consultant’s perspective ............. 35 8.2.5 Design rules from the nurse in the community perspective ...................... 36 8.2.6 Design rules from the Welsh Government civil servant perspective ..... 36

8.3 Challenge Topics and their implications for the SOP ................................... 37 8.3.1 How the groups described the benefits ............................................................... 37 8.3.2 How the groups saw the priorities ........................................................................ 38 8.3.3 Improving clinical outcomes .................................................................................... 39 8.3.4 Reducing the risk of cancer ....................................................................................... 40 8.3.5 Improving patient flow ............................................................................................... 41 8.3.6 Improving access ........................................................................................................... 42 8.3.7 Continuous service improvement .......................................................................... 43 8.3.8 Organising for sustainable delivery ...................................................................... 44 8.3.9 Workforce education and training ........................................................................ 45 8.3.10 Delivering excellence in research and development ..................................... 46 8.3.11 The principles of Prudent Healthcare .................................................................. 47 8.3.12 Strengthening leadership .......................................................................................... 48

8.4 Feedback from other meetings .............................................................................. 48 9 Next steps for engagement ........................................................................................... 50 9.1 Confirming the scope .................................................................................................. 50 9.2 Building a formal engagement programme .................................................... 51 9.3 Equipping staff with the skill to engage ............................................................ 51

Annex A -‐ Experience Based Design in detail

Annex B -‐ Accelerated Design Events in detail


Engagement Project Partners Outhentics Consulting Limited www.outhentics.com [email protected]


Executive summary

1 Introduction Velindre NHS Trust has developed a Strategic Outline Programme (SOP), which describes its ambitions to work with patients, families, carers and a wide range of partners to transform the delivery of Cancer Services in South East Wales.

The Trust undertook a period of intensive engagement with staff and external stakeholders during March, April and May 2015. The objective was to test the assumptions and principles that underpin the SOP and to seek views on the proposed Service Model (Figure 1). Over 400 people took part directly, either through Experience Based Design (EBD) workshops for Velindre staff, patients and carers, Accelerated Design Events (ADE) for staff, partners and stakeholders or at meetings of

external stakeholders where the SOP was a formal part of the agenda.

The engagement process was well received by participants. There was strong support for the assumptions and principles described in the SOP. Over two thirds of participants at the three main workshops agreed that ‘the Service Model is on the right track even if there is more work to be done’ (Figure 2).

As part of the co-‐design element of the engagement process participants suggested a number of opportunities, challenges, priorities and outstanding questions that they believed needed to be addressed. Most had already been identified within the SOP although there were some new suggestions and questions as well as some reframing that will feed into the next stage of the planning process.

This report describes the process and outcomes of the engagement project.

2 Strategic Outline Programme objectives The Strategic Outline Programme (SOP) was the focus for the engagement project. The SOP has the following core investment objectives:

• To provide patients with high quality services that deliver optimal clinical outcomes.

• To continuously improve clinical outcomes by being a leader in research, development and innovation.

• To achieve all national cancer and clinical and practice standards that are considered to be best in class internationally.

• To deliver Cancer Services to the population in the most cost effective, efficient and productive manner.

• To deliver a high quality and sustainable service.

Note:

Sidebar quotes are drawn directly from ADE event evaluation forms unless

otherwise attributed.

Photographs are from the engagement events unless otherwise attributed

Figure 1 -‐ The Service Model

Figure 2 -‐ Participant view of the Service Model

“I have more to offer to the process that I thought I could. It has been

useful to gain insight into where the NHS in Wales want to go with Cancer

services.”


Central to the achievement of these investment objectives is the development of an integrated Service Model that achieves outcomes comparable with the best elsewhere in a sustainable manner.

A significant amount of work has been undertaken to date to develop a high-‐level Service Model within the Trust.

The development of the Service Model had been initially been undertaken by the Velindre NHS Trust (VNHST) Programme Team. The next stage was to test the initial thinking across a wider range of stakeholders, both internal and external, with a view to learning more about the strengths and challenges of the initial service design, and how it could be improved.

One of the key principles within the SOP is that of ‘co-‐design and co-‐production’ including patients, carers and professionals, together with a new sense of common purpose and co-‐ownership of system improvement. This stage of the project provided an opportunity for the Velindre NHS Trust to test the way it hopes to work with partners and the wider community in the future.

3 The engagement project The engagement project was designed to bring the principles of co-‐production to life and to help demonstrate to stakeholders that the Trust is committed to turning intent into practice from the start of the engagement process.

The project used two main methodologies for engagement:

• Three one day Accelerated Design Events (ADEs) for the Trust’s key partners, stakeholders and staff. A total of 290 people attended the workshops, which took place during April 2015. Participants were briefed on the Service Model and then worked in groups to test core design principles and to explore a set of Challenge Topics synthesised from a pre-‐event survey and the key issues identified by the SOP.

• Two Experience Based Design (EBD) workshops – the first for Trust staff had 54 participants and the second for patients, carers and staff together had an attendance of 49. Participants had the opportunity to map the current patient pathway within Velindre and to identify opportunities for improvement from both a staff and patient perspective.

In addition the SOP was presented to and discussed by three national groups -‐the Directors of Planning, Directors of Nursing and Medical Directors.

4 The emerging themes for the Trust The majority of participants were very positive about both the Service Model and the engagement process. There was little challenge to the ambitions described in the SOP although participants were keen to understand how the

Figure 3 -‐ Design Rules Word Cloud

“Great ambition, collective sense of excitement. Energy. Open to

possibility. Still lack of clarity over terms and concepts.”


emerging Model would be implemented. The most common questions were about the geographical and pathway scope of the proposals and how the leadership across the partner organisations could be most effectively achieved.

The feedback from all the engagement activities has been very positive about the Model being proposed by the Trust. Over two thirds of participants in the three ADEs agreed that the Trust was ‘on the right track with its proposals even if there was more work to be done’ to develop the Model and implementation approach. A further third felt there was ‘more work to do before I can commit myself one way or another’. Only 2% of participants were ‘not happy with the Model’. Most participants left the workshops feeling optimistic and encouraged.

The benefits participants saw for the proposals and their priorities were well aligned with the SOP. These are show below in figures 4 and 5. These are broken down in more detail in Annex B.

In three separate meetings with Directors of Planning, Directors of Nursing and Medical Directors from across Wales there was strong support for the analysis of the drivers described in the SOP and the need for there to be a more coordinated approach to the transformation of cancer services in Wales. As would be expected from groups with a view across Wales there was agreement that it was the responsibility of the LHBs to make the connections across the country in order to ensure consistency and alignment. The need for a clear governance structure was acknowledged. There were however, as might be expected at this stage in the programme, more questions than answers but also a commitment to collaboratively finding answers to those questions.

“Important to link with all sectors involved in patient pathway/ plan: all Wales approach needed looking at full

pathway not just treatment.”

Figure 4 -‐ High-‐level priorities from ADEs

Figure 5 -‐ High-‐level ambitions from ADEs

“On the right course but needs all areas to be recognised as providing a high standard of care not just Velindre

if this is to improve collaboration.”


Two groups of overarching themes emerged from the engagement project.

The first group of themes relate to how the Trust Board manages scope and expectations and strikes a considered balance within its projected capability and capacity that allows it to:

• Maintain and improve current quality and performance during the planning and implementation process

• Undertake the transactional elements of the Business Case including procurement, implementation and build

• Undertake internal pathway redesign activities to develop the new internal pathway model

• Influence the redesign of those parts of the pathway that are outside the direct control of Velindre but which are critical to the success of the internal redesign

• Lobby for, and actively participate in, national procurement on turn-‐key elements such as IT

• Influence the wider pathway to deliver the new Service Model within which the Velindre offer fits.

The second group of themes relate to the detail and practicalities of implementation, which are the responsibility of the Programme Board. These are the sort of things that are on the minds of front line staff and managers. They emerge largely from an analysis of what groups thought was working well, what they saw as the barriers and their priorities. They can be see as key factors for the Velindre NHS Trust Programme Board to address as they decide the detail of implementation.

4.1 The role of the Trust Board on managing scope and expectations

Across all of the responses to the challenge topics a number of common themes emerged. Most of these themes are closely interlinked and set an agenda for leadership discussions both within Velindre and between Velindre and key stakeholders in Wales – in particular the Welsh Government (WG) and Local Health Boards (LHBs). They are properly the responsibility of the Trust Board to lead on. We have framed themes as a core question and a recommendation to the Trust Board.

4.1.1 Leadership

What is the leadership role/model of co-‐ownership that needs to develop in order to shape the strategic developments and influence the development and implementation of those parts of the pathway and Service Model outside the span of its direct control?

Identified in the SOP, participants reinforced this theme in their discussions. They were looking for a clear sense of shared leadership and co-‐ownership between Velindre and its partners to remove any existing barriers or constraints to change.

“How will we manage IT systems? Currently systems don't "talk" to each

other across the Network. Will new systems be funded for i.e. all GP

practices?”

Polling

“How does information factor into this development – we need a well

resourced cancer info system in order to collect vital data to prove we are

working effectively and with patients best interests”

Polling


The Velindre NHS Trust Board will need to agree with WG and LHBs an achievable leadership/co-‐ownership model and how it will develop over the extended time-‐period.

4.1.2 Geographical scope

What is the geographical scope of the proposals and how do they align with South West and North Wales?

The SOP makes clear reference to South East Wales constituting the geographical scope. The SOP also identifies the opportunities and potential available to integrate or align cancer services across Wales as part of this process of improvement and share knowledge, experience and value with all. Participants also identified this as a key theme at each event.

The Velindre NHS Trust Board will need to co-‐design and agree with WG and LHBs the geographical staging of the development and implementation of the new clinical Service Model and the supporting elements such as education and training and research and development.

4.1.3 Pathway scope

What is the initial scope of the pathway redesign required to support the core Velindre priorities?

Participants explored the new Service Model and the pathways that will span it. The ambition to redesign the pathways around the patient, described by the SOP was strongly supported by participants. However we would suggest that priorities need to be matched to the capability and capacity within the wider system to deliver the necessary changes

The Trust Board will need to identify and agree those elements of the pathway external to Velindre Cancer Centre (VCC) that are critical to the VCC development and its plan for co-‐owning/influencing them.

4.1.4 Governance

What is the governance model that will best support and align the development of the Service Model and the pathways that span that Model?

The Programme has established effective governance arrangements to lead and deliver the programme elements that are within the direct span of control of the Trust. The SOP also identified the need for wider discussions about governance models that supported implementation of those parts of the Service Model that were not within the direct span of control of the Trust. Again participants identified this as an important theme at all three events.

Governance will need to be further reviewed and flexed following discussions with LHBs and other partners as the phasing of the various projects and the implementation of the service model becomes is finalised.


4.1.5 Expectations and engagement

How are realistic expectations set, shared and managed throughout the lifetime of the programme amongst staff, patients and carers and other cancer care partners?

The SOP sets out a very ambitious vision for the future of Cancer Services in South East Wales. Participants were engaged and enthused by that vision. However participants did question how long this would take, reflecting on experience of how long it had taken to deliver other service changes in the past. There is a need to match the realities of the pace of delivery with the expectations of key stakeholders in order to keep them engaged and positive.

The Trust Board needs to continue to discuss and define its leadership/co-‐ownership role, pathway scope and governance mode with partners. The resulting ‘road map’ must be communicated effectively and regularly if it is to manage expectations and keep its partners engaged for what will be a long journey.

4.2 The role of the Programme Board in scoping the practicalities of implementation

These themes relate to participants views on the detail of implementation – the practical opportunities and barriers to the development of the Service Model and pathway redesign. In each case the topics were already identified within the SOP but the way the participants viewed and articulated them provides a valuable insight into their priorities and concerns.

These are topics that the Programme Board is already preparing to address as part of its role in partnership with the wider cancer delivery system.

4.2.1 Information and IT

If the patient is to be the ‘hub’ of the new Service Model then there is a need for the care planning and treatment record to be aligned around the patient rather than organisationally fragmented as it is now. Groups strongly supported this theme in the SOP and made the following suggestions:

• There is a requirement for a single accessible Cancer Care Plan and Treatment record for each patient with patient articulated outcome goals at its core. This would allow the system to introduce a more specific measure of the proportion of patients who are meeting their own outcome goals.

• Pathway redesign and management needs to be supported by good quality and timely capacity and demand data.

The Programme Board will need to act as a catalyst for wider discussions with partners across Wales about the options for developing and meeting the requirement for a single Cancer Care Plan and Treatment Record and for improved data for redesign.

“We should think about term Cancer Village. It has negative implications and suggests lack of hope. Let’s be

more upbeat.”

Polling

“Going the right way with involving everyone in decision making and feel

that I can support these decisions better and am needed as a non-‐

clinical member of staff.”


4.2.2 Communication and networks

Many groups supported the need identified in the SOP for improved communications and networking within their feedback – partly based on the opportunity that the events had provided for them to network and engage with other partners in the cancer pathway.

The Programme Board will need to work with partners and Cancer Networks etc. to agree the priorities for network development that align with the priorities in the Service Model and how to design, implement and sustain those networks.

4.2.3 Partnership and collaboration

Prudent health, co-‐design and co-‐production are central and repeated principles within the SOP. The participants in the events strongly endorsed this approach. There was a widespread desire for improved partnership and collaboration including the more active engagement of patients and carers. We have identified two areas within this theme for the Programme Board to consider.

• Broadening individual perspectives on the pathway – The Programme Board should promote opportunities for Velindre staff and partner organisations to take part in exchanges and shadowing across the pathway – in particular in Primary and Community Care settings. This will build relationships and promote altered perspectives and a deeper understanding of others’ roles and challenges.

• Common models of collaboration and improvement – there should be a common agreed ‘Change Model’ which is used by all participants to underpin the redesign the pathway and implement the Service Model’.

We suggest it is for the Programme Board to promote a discussion with partners to develop an agreed ‘change’ model that underpins partnership and collaboration – for example the ‘Guiding Coalition’ model described in Kotter’s Dual Operating Model1 might be a useful starting point.

4.2.4 Equity

Participants strongly identified with the SOP theme of equity of access both in terms of geographical access and access to a consistent quality of treatment and support. There was a keen sense of the need for equity of access – regardless of geography, culture and social status.

The Programme Board should consider including an ‘equity impact assessment’ as part of planning for each project within the programme.

4.2.5 Maintaining patient confidence and trust in the new service model

The ‘Village’ terminology used with the SOP to describe the spokes of the Service Model had mixed responses from participants with patients welcoming it and a number of partners less enthusiastic. A good suggestion was to simply build on

1 Accelerate; John P Kotter HBR November 2012 https://hbr.org/2012/11/accelerate

“Velindre brand and ‘cancer villages’ – more thought needed on approach

and not alienating colleagues in LHBs or patients.”

“When we explain to patients who come to the Macmillan Cancer Unit for

the first time that we are part of Velindre, you can see them visibly

relax”

Staff quote from observation visit to Macmillan Cancer Unit


the brand recognition for Velindre Cancer Centre and use the terminology ‘Velindre at….’ (i.e. Velindre at Gwent) linking the Velindre name with the geographical location.

The Velindre ‘brand’ had strong connotations of a place of safety and of access to excellent treatment and support. It is currently firmly attached to a place – the Velindre Cancer Centre. The Service Model proposes that there is more focus on Velindre as a service in a number of geographical locations rather than focused on one place.

The Programme Board should consider the terminology used in describing the services offered i.e. the term ‘Village’ and recommend to the Trust Board whether it should be changed to a similar alternative – ‘Campus’ was one suggestion for the spokes of the Service Model.

The Programme Board should consider more clearly defining the use of the ‘Velindre brand’ to mean tertiary and complex services provided by Velindre whether at the spokes of the Service Model or at a patient’s home. This would also help maintain the integrity of the Velindre brand in the eyes of patients and carers. This must be considered carefully as it needs to also accentuate the NHS Wales brand and values to ensure both are enhanced and synonymous with excellence.

4.3 Next steps for engagement This project has demonstrated both to Velindre staff and other stakeholders that the Trust is prepared to think differently about how it engages in co-‐design and co-‐production. It is acting out and testing out the core principles it has described in the SOP and in doing so has engaged over 400 participants in intensive review of key elements of the SOP in a short period of time. This is now a good time to pause, reflect on the learning from that process and frame the next steps in a continuing dialogue.

4.3.1 Ensuring alignment between the SOP and strategic improvement in cancer services across Wales

The next steps in the engagement programme need to be framed by the scope of the proposed development. We recommend that the Trust now takes the opportunity to discuss with LHBs and the Welsh Government in the first instance, how it can further align the programme with the wider cancer agenda and use this to inform the next stage in the engagement process.

4.3.2 Building a formal engagement programme

A formal engagement and communication plan needs to be developed to underpin the next stages in the process and build on the experience of this stage of the project. The guiding principles are:

• Using methodologies that embody co-‐design and co-‐production – developing new ‘habits’ of engagement

• Embodying the Service Model concept of ‘patient as hub’ and complex services ‘closer to home’ by bringing the engagement to the patient and carer and to more local settings rather than vice-‐versa

“Challenge of integrating this and reconciling with other Wales

organizations. Not just Velindre – all Wales.”


• Reflecting the revised scope to ensure realistic expectations of what is achievable

• Tailoring activity to engage harder to reach groups of stakeholders such as Primary Care

• Building a carefully planned rhythm of engagement aligned with the key stages in development programme.

4.3.3 Equipping staff with the skills and support to engage

The challenge for the Trust now is to take the new co-‐design and co-‐production approach and make it a new ‘habit’ embedded within the ‘way we do business’.

This will involve training and coaching staff to use different engagement methodologies such as EBD, ADE, Open Space, World Café and ‘Scan, Focus, Act’. The aim should be to develop the confidence in these techniques until it becomes a productive habit not a step into the unknown.


Engagement Project Detailed Report

5 Introduction This section introduces the background to the Strategic Outline Programme (SOP) and the Engagement Project. The Engagement Project was an opportunity for the Velindre NHS Trust to test how best to embody the principles of co-‐design and co-‐production that lie at the heart of the SOP.

5.1 Objectives of the Strategic Outline Programme Velindre NHS Trust is currently in the process of developing a Strategic Outline Programme (SOP), which aims to transform the delivery of Cancer Services in South East Wales.

The Programme has the following core investment objectives:

• To provide patients with high quality services that deliver optimal clinical outcomes.

• To continuously improve clinical outcomes by being a leader in research, development and innovation.

• To achieve all national cancer and clinical and practice standards that are considered to be best in class internationally.

• To deliver Cancer Services to the population in the most cost effective, efficient and productive manner.

• To deliver a high quality and sustainable service.

The Programme is intended to achieve transformational changes across the whole system. Therefore, it considers a wide range of issues and presents potential improvements across the various component parts that contribute to the system:

1. Improving detection and diagnosis: Primary and Community Care.

2. Improving capacity, capability, treatment and care: Secondary Care.

3. Improving specialist treatment and care: Tertiary Care.

4. Improving “Living with the Impact of Cancer” services.

5. Improving dignity and care: Palliative Care.

6. Innovating and advancing: research and development.

7. Developing a highly skilled workforce: education and training.

Central to the achievement of these Investment Objectives is the development of an integrated Service Model that achieves outcomes comparable with the best elsewhere in a sustainable manner.

“At the beginning of a massive journey. Huge (but achievable) task getting all sectors/organisations on

board.”

Figure 6 -‐ The Velindre Cancer Centre site

Note:

Sidebar quotes are drawn directly from ADE event evaluation forms unless

otherwise attributed.

Photographs are from the engagement events unless otherwise attributed


A significant amount of work has been undertaken to date to develop a high-‐level Service Model within the Trust. The Service Model has the following features and characteristics:

• It is focused on the principles of prudent health and co-‐production.

• It supports patients, families and carers to identify their goals and how the system is able to support them to achieving them.

• It creates a ‘hub and spoke’ model with the patient at the heart, with provision of care at home, within the local community or at a specialist cancer centre.

• It promotes a ‘whole systems’ approach fully integrated with Primary, Community and Secondary Care.

• It provides support, advice, expertise and leadership available in Primary, Community and Secondary Care to improve the levels of early detection and diagnosis.

• It ensures partnership and collaboration between all public and voluntary sector organisations.

5.2 Objectives of the engagement project The development of the Service Model was undertaken by the Velindre NHS Trust (VNHST) Programme Team. The next stage was to test the initial thinking across a wider range of stakeholders, both internal and external, with a view to learning more about the strengths and challenges of the initial service design, and how it could be improved.

The objectives of this engagement exercise were:

1. To increase awareness of the Strategic Outline Programme, ‘Transforming Cancer Services in South East Wales’, amongst partners and improve the general knowledge and understanding across interested parties.

2. To gain valuable feedback from partners about the programme and the emerging Service Model.

3. To further refine the Service Model and understand how it might operate in practice.

4. To better understand the relationship between the Service Model and other key components of the SOP including research and development, education and training.

5. To identify additional programme benefits that may be realised as a result of the programme.

6. To assist in confirming the final programme structure and the associated projects.

One of the key principles within the SOP is that of ‘co-‐production’ across the system including patients, carers and professionals. Any engagement process needs to set the tone for the proposed Service Model and its implementation. This stage of the project provided an opportunity to embody and test the way the Trust intends to continue to work with partners and the wider community.

“It's an enormous task, but if we break it down into its constituent parts and work across disciplines it will work.”

Polling

“It’s a very exciting time but one that is packed with challenges – as the

challenge arises Velindre must rise to the challenge!”

“There is good will, willingness and enthusiasm. Are the decision makers of the HBs engaged and attending

these events?”


6 Process overview This section describes the process underpinning the Engagement Project, the methodologies of Experience Based Design workshops (EBD) and Accelerated Design Events (ADE) and the way these were applied to the project. The process was co-‐designed with the Transforming Cancer Services programme team.

6.1 Process summary The engagement project was designed to bring the principles of co-‐production to life and to help demonstrate to stakeholders that the Trust is committed to turning intent into practice from the start of the engagement process.

The following principles were central to the design of the engagement project:

• Co-‐design and co-‐production at every stage in the process – embodying the principles in the SOP.

• The Trust in the lead with a visible and clear leadership profile throughout the process of engagement.

• High value engagement – ensuring that engagement events add value for participants by being structured to be high energy and highly interactive – providing opportunities for cross fertilisation and learning and supporting new networks and new relationships.

• Peers not hierarchies – ensuring that all stakeholders have the opportunity for an equal voice in the process. All stakeholders are peers in co-‐design and co-‐production and have much to learn from each other by working together.

6.2 Planning and design

6.2.1 Engagement process co-‐design

The Outhentics team worked with the Trust Programme team through a series of initiating workshops to develop and scope the design of the engagement process as well as undertake a detailed stakeholder analysis. A Scan, Focus and Act methodology (see 3.4.1 for a definition) was used to rapidly elicit the key issues and actions required to underpin the engagement process. An engagement timeline and critical path was also developed.

6.2.2 Stakeholder analysis and mailshot invitations

The Trust, supported by Outhentics, undertook a rapid review of its current contact data sets informed by the initial stakeholder analysis undertaken in the co-‐design workshops with the programme team. This resulted in a master contact database of 500 individuals who were identified as being important to the review, design and implementation of the Service Model. A number of these were also important network ‘nodes’ that would be able to engage their wider

Planning and design: mobilising and aligning the project

Communications materials design: getting the message over simply and consistently

Experience Based Design (EBD) workshops: exploring the patient pathways

Accelerated Design Events (ADEs): engaging stakeholders in co-‐design

Report delivery: putting together the jigsaw to create the bigger picture

Figure 7 Key stages in the SOP engagement project

“Great to hear from all organisations, represented – viewpoints not

considered previously. Great place to start.”

“The questions seem so easy to ask but the answers are so complex. How can we possibly ensure that we consider

every aspect and deliver on it?”

Polling


networks. The list did not include the majority of Velindre NHS Trust staff, who would be contacted through normal Trust internal communications channels.

This listing was used to target a series of mailshots inviting individuals to register for one of the three large-‐scale Accelerated Design Events. The campaign was targeted at 500 recipients, some of whom in their network capacity forwarded the email to their network contacts. The campaign recorded over 4,000 ‘opens’ of the email which is likely to be a reasonable approximation of the number of people the campaign eventually reached (assuming that those people who ‘opened’ the email more than once were cancelled out by those who did not download any in-‐line images and thus did not trigger the ‘open’ notification).

The campaign registered over 900 clicks through to the event booking pages.

It is worth noting for future event design and logistics that there was a significant proportion of recipients whose NHS Wales desktop browsers are very out-‐of-‐date and so were unable to access the full booking functionality of the website (Eventbrite). They could contact the programme direct to ask to be booked on to an event.

A summary of the full SOP was also developed, together with a PowerPoint version, for use as pre-‐reading by event participants.

6.3 Experience Based Design (EBD) workshops Two pathway-‐mapping workshops for staff, patients and carers were run based on the Experience Based Design (EBD) methodology.

The first EBD workshop was held on 25th March 2015. It was attended by 54 staff from Velindre. Attendees ranged from the Medical Director to representatives from staff groups who have not traditionally engaged in service improvement work such as domestic and estates services, as well as the SOP team.

To build on the work started in the first workshop, the second was designed as an opportunity for staff and patients to work together to start to co-‐design services for Velindre.

The second EBD workshop was held on 18th May 2015. It was attended by 49 patients, their carers, staff and members of the SOP team.

The outputs and more detail on the EBD workshops can be found at Annex A.

6.3.1 Background to the EBD methodology

The EBD approach draws on experience to design better healthcare services. It is unique in the way that it focuses so strongly on capturing and understanding patients’, carers’ and staff experiences of services, not just their views of the process like the speed and efficiency with which they travel through the system.

EBD deliberately draws out the subjective, personal feelings

“Need to work together (HBs and Velindre and Partners) to shape cancer

services-‐ keeping the patient at the centre.”

“A lot of committed, passionate people working in this field. Feel as if

everyone nervous about the problems – how do we fix? Concerned that the

model doesn’t go far enough to address issues, particularly

integration, prevention, pathways.”


a staff member, patient or carer experiences at crucial points in the care pathway. It does this by:

• Encouraging and supporting staff members, patients and carers to ‘tell their stories’

• Using these stories to pinpoint those parts of the care pathway where the user’s experience is most powerfully shaped (the ‘touch points’)

• Working with patients, carers and frontline staff to redesign these experiences rather than just systems and processes.

The EBD approach was developed based on the work that the NHS Institute for Innovation and Improvement had done with service designers to focus on improving patient, carer and staff experience of health services. A critical aspect of this was to ensure that there was a real understanding of the challenges from the perspective of those who use the service and that it is important to listen to and test a range of options rather than jumping to an early solution based on a professional perspective of what is needed. User-‐centred design has a continual focus on the user of a product or service. In user-‐centred design, assumptions are not made about users’ requirements, but users are engaged at the start of the design process so that they can describe their requirements.

Service designers are experts in exploring users’ experiences to discover insights or themes, from which areas for opportunity are identified. The resulting solutions meet users’ real needs rather than being based on what the ‘designer’ thinks they need. More details on the EBD methodology can be found at http://www.nhsiq.nhs.uk/download.ashx?mid=8866&nid=8865.

6.3.2 The EBD workshops in outline

The process began with a series of observation visits to Velindre Cancer Centre (VCC) and the Macmillan Cancer Unit to create the framework for the workshops and provide the starting catalytic insights.

The first workshop was for Velindre NHS Trust staff. The participants were asked to work together in five groups exploring and sharing what aspects of the pathway they thought worked well, should be celebrated and built upon and what aspects they felt needed improvement. The five areas the staff worked with were:

• Radiotherapy at VCC

• Chemotherapy at VCC

• Chemotherapy outreach

• In-‐patients at VCC

• Out-‐patients.

The second EBD workshop built on both the outputs from the first workshop and also the pathway mapping exercise conducted during the ADE workshops. The workshop was for Velindre staff and patients and carers.

“Velindre is small part of pathway and so vital to integrate with all other services in pathway (primary-‐-‐>

palliative care.)”

“Collaboration is required throughout the whole patient journey – not just

VCC.”


Participants were invited to work on one of four parts of the pathway in more detail identifying what improvements could be made and what the key elements of a redesigned process might comprise. The four areas were:

• SACT (Chemotherapy)

• Radiotherapy

• Out-‐patients

• In-‐patients.

The outputs and more detail on the workshops can be found at Annex A.

6.4 Accelerated Design Events (ADE) Three one-‐day ADE workshops, co-‐designed with the Velindre Programme Team, were held at the All Nations Centre in Cardiff on 13th, 15th and 21st of April. In total, 290 people attended the workshops.

• 54% of attendees were Velindre NHS Trust staff

• 46% of attendees came from other organisations

• 34% of attendees were clinicians

• 11 patients and carers attended

• Primary care was significantly under-‐represented

6.4.1 Background to the ADE methodology

ADEs are structured high energy, intensive engagement events involving a wide range of stakeholders that are carefully designed to involve participants in co-‐design, feedback, networking and shared learning. Bringing representatives from all stakeholders – system leaders, clinicians, patients, carers, commissioners, third sector and social care – into the space embodies co-‐production and mobilises teams, organisations, communities and networks around collective ambitions.

The Accelerated Solutions (AS) Methodology has its foundations in a range of different interventions including Open Space, World Café and Collaborative Action Planning that are combined into a single process running over the space of one to three days. This allows participants to achieve in a short space of time what might take several months using more traditional methods.

Accelerated Events are typically structured around three stages:

• Scan – this phase provides participants with the opportunity to stand back from the challenge and view it from different perspectives. It encourages divergent thinking and enables participants to come to a common understanding of the challenge and its dimensions as well as to develop a shared language and shared understanding of the challenge.

• Focus – in this phase the thinking is much more ‘convergent’. Possibilities and long lists are reduced down, issues are summarised and ideas selected for action. The emphasis is on quality of thought and applying good judgement. In one-‐day events the topics for participants to work with

“Designing the service should be around people not buildings-‐ need to

work out how many front line staff are needed to care for the patient

wherever he/she may be-‐ including Drs, nurses, secretaries etc.-‐ then fit

the size and location of the buildings/space required to the staff

that will deliver the care.”

Polling


are likely to have been determined beforehand – often using a pre-‐event survey, as was the case in this project. In longer events these themes may be emergent from the Scan phase.

• Act – this phase determines how the group will follow-‐through. It draws together all of the outputs from the event and aims to create group alignment and intention and commitment to act. Where possible, this phase is concerned with making definitive decisions on the immediate priorities required to mobilise stakeholders and to gain momentum (setting six month goals and 30 day mobilisation action plans are common approaches).

At least 75% of the time during the event is for group work and interactive activities. In the group work participants are asked to self-‐facilitate using a simple methodology based on nominal group and visual mapping techniques.

Output capture is achieved through the use of A0 poster templates, electronic free text polling, a graffiti wall and ‘learning and evaluation’ forms.

6.4.2 ADE workshops in outline

6.4.2.1 Pre-‐event survey

Prior to the events a short survey was sent out to participants registered for the workshops asking for their response to the following question:

‘To help us design the agenda for the workshops we would like to ask you to share the top four questions about the future of cancer services that come to mind when you think about the diagram [shown alongside this quote]’

From the responses a series of common themes were distilled. These were reviewed by the Programme Team, aligned with the key elements of the Strategic Outline Programme and then ten chosen for detailed review during the workshops. These were:

1. Improving patient flow 2. Improving clinical outcomes 3. Workforce education and training 4. Improving access 5. Organising for sustainable delivery 6. The principles of prudent healthcare 7. Continuous service improvement 8. Delivering excellence in research and development 9. Strengthening leadership 10. Reducing the risk of cancer.

6.4.2.2 Briefing session

Participants were briefed on the main features of the Service Model and the planning process by Dr Tom Crosby, the Clinical Lead for the programme and Carl James, the Director of Planning and Performance.


6.4.2.3 Design Rules session

A ‘Through Different Eyes’ activity with participants being asked to develop and articulate a set of ‘design rules’ and ‘anti-‐rules’ for Cancer Services from the perspectives of a range of different stakeholders:

• Patients • Carers • GPs • Secondary Care consultant • A community nurse • A Welsh Government civil servant.

This exercise encourages participants to stand outside their normal experience and imagine the service from someone else’s perspective – articulating the key principles for design and delivery (design rules) as well as the bad habits (anti-‐rules) of the current service.

Groups captured their top four design rules and top four anti-‐rules on an A2 template. After the event the outputs were transcribed to a simple Excel database and synthesised into a set of common design principles articulated as far as possible from the stakeholder’s point of view and in their language (the database is available separately and a printed version available in Annex B).

6.4.2.4 Challenge Topics session

Participants worked in groups on one of the ten Challenge Topics identified through the pre-‐event survey. For each topic groups were asked to identify:

• A set of ambitions/outcomes that represented successfully resolution of the challenge

• What was already working well (www) that could be built on or learnt from in order to achieve these ambitions

• What challenges/obstacles there were to achieving these ambitions • The top two priorities from each of the ‘www’ and obstacles and what could

be done to start with to begin to change • Insights and inspirations that arose during the discussions • Areas of disagreement that could not

be resolved but that represented areas for further work in the next stages

• Key messages for each of the main partners/stakeholder groups who have a contribution to make to the redesign of Cancer Services.

During this session participants had a scheduled opportunity to visit any other topics with which they felt an affinity in order to contribute and cross-‐fertilise.

Outputs were captured on A0 templates and subsequently typed up into an outputs database in Excel for synthesis and summarisation (the database is available separately and a printed version available in Annex B).

Figure 8 -‐ The pathway map developed during the ADEs


6.4.2.5 Cancer pathway wall sessions

Participants were invited to contribute to building a detailed cancer pathway map from awareness of potential cancer symptoms to survivorship or end of life. During the first two workshops this activity took place during the break provided for participants to cross-‐fertilise and contribute to other topics (called ‘Shift and Shape’). For the third workshop one group worked on this wall exclusively during the Challenge Topic part of the event.

A high level patient journey had been mapped out prior to the ADE events as part of the observation visits to VCC and the Macmillan Cancer Unit at Merthyr Tydfil and early work with the SOP team.

The key stages of the pathway were identified along with some more detailed mapping for the areas observed or where patients were interviewed:

Velindre Cancer Centre:

• Radiotherapy

• In-‐patients


Macmillan Cancer Unit:

• Chemotherapy


In addition to the process steps identified, the initial map also contained elements of emotional mapping – quotes and insights from patients who had been interviewed. Participants during the workshops were invited to build on this map.

During the event participants worked with a large-‐scale pathway wall to capture suggestions and insights. The outputs were captured in a pathway map graphic (see Annex A).

6.4.2.6 Personal learning and reflections session

The final session ended with the opportunity for individuals to work in pairs to reflect on their personal learning and on their experience of the process. They were asked to complete a simple feedback form to capture the learning and how they rated the event. These outputs were transcribed to a simple Excel database (available separately and printed in Annex B).

Participant evaluation of the event design and process is shown in figure 4: 74% of participants rated the design and running of the event at 8/10 or over.

6.5 Other engagement activities As part of the engagement project the SOP was discussed as a formal agenda item at three wider health system meetings as part of the regular agenda. These were:

Figure 9 -‐ Participant event evaluation scores


• Directors of Planning on 17th April 2015 • Directors of Nursing on 22nd May 2015 • Medical Directors on 5th June 2015 • Chief Executive Officers 22 June 2015

7 The emerging themes and their implications for the SOP

The majority of participants were very positive about both the Service Model and the engagement process. There was little direct challenge to the ambitions described in the SOP. Over two-‐thirds of participants in the three ADEs agreed the Trust was ‘on the right track with its proposals even if there was more work to be done’.

This section highlights the overall themes that have emerged from the engagement process. Most of these have already been identified within the SOP although participants have both reframed some as well as suggested a few new areas for consideration that were not explicitly identified within the SOP.

7.1 The challenge for the Trust Participants were asked at the end of the ADEs to share their view on the proposed Service Model. Over two-‐thirds were content that the Trust was on the right track. About a third wanted to see more detail emerge before they committed to it. This is representative of most of the discussions that took place across all engagement activities.

The SOP sets out an ambitious and wide-‐ranging vision for the future of Cancer Services not just within the Trust but also across the breadth of the system from prevention and diagnosis through to living with the consequences of cancer as a long-‐term condition. Much of what the SOP sets out to describe is not within the direct control of Velindre NHS Trust and depends on a set of aligned actions across a wide range of partners. For many of these partners cancer is only one part of a crowded and complex healthcare agenda.

Velindre NHS Trust itself has limited leadership and management resources even with additional support from the Welsh Government for the development of the Business Case. The leadership of the Trust will need to manage the scope of the process very carefully to ensure that ambition is closely balanced by capability and capacity. The risk is either that expectations are raised internally and externally but cannot be met by the capability and capacity available or that by being too ambitious the capability and capacity is overstretched and leads to failures in performance or planning.

During the ADEs two groups of common or over-‐arching themes emerged, both of which have a direct bearing on how the Trust approaches striking the balance described above. Most of them appear within the SOP with differing emphases but not necessarily as key decisions on which the rest of the plan will hinge.

Figure 10 -‐ Participant view of the Service Model

“On the right course but needs all areas to be recognized as providing a high standard of care not just Velindre

if this is to improve collaboration.”


The first group of themes relates to how the Trust Board manages scope and expectations and how it strikes a considered balance within its projected capability and capacity that allows it to:

• Maintain and improve current quality and performance during the planning and implementation process

• Undertake the transactional elements of the Business Case including procurement, implementation and build

• Undertake internal pathway redesign activities to develop the new internal pathway model

• Influence the redesign of those parts of the pathway that are outside the direct control of Velindre but which are critical to the success of the internal redesign

• Lobby for, and actively participate in, national procurement on turn-‐key elements such as IT

• Influence the wider pathway to deliver the new Service Model within which the Velindre offer fits.

The outcome will allow the Trust to more effectively agree and manage priorities within scope and to manage expectations internally and amongst its external partners and stakeholders.

We suggest that these need to be the focus of more detailed co-‐design discussions with key stakeholders – in particular the Welsh Government and LHBs. The outcome should be a clear listing and categorisation of the priorities along the full pathway, clarity of their impact on the successful implementation of core Velindre redevelopment/redesign proposals, which partners have responsibility for these priorities and the nature of Velindre’s engagement with them.

The second group of themes relates to the detail and practicalities of implementation, which are the responsibility of the Programme Board. These are the sorts of things that are on the minds of front line staff and managers. They emerge largely from an analysis of what groups thought was working well, what they saw as the barriers and their priorities. They can be seen as key factors for the Velindre NHS Trust Programme Board to address as they decide the detail of implementation.

7.2 Key themes – managing scope and expectations Across all of the responses to the challenge topics a number of common themes emerged. Most of these themes are closely interlinked and set an agenda for leadership discussions both within Velindre and between Velindre and key stakeholders in Wales – in particular the Welsh Government and LHBs. They are properly the responsibility of the Trust Board to lead on.

7.2.1 Leadership

What is the leadership role/co-‐ownership model that Velindre needs to develop in order shape the strategic developments and influence the implementation of those parts of the pathway and Service Model outside the span of its direct control?

Figure 11 -‐ One word about how you feel: From event evaluation

“Everyone seems to agree on what outcome we want. The question is

how?”

“This is a big task and more work needs to be done with more focus on specific aspects rather than general

terms.”


The SOP describes a new clinical Service Model and an associated transformation of the patient pathway across the wider health and social care system. The implementation of this vision represents a significant leadership task for Velindre NHS Trust and its partners (see section 2.27 of the SOP). Add to this the Welsh Government proposal of a national leadership/co-‐ownership role and there is a real opportunity to drive change. This must be balanced with the risk that represents for Velindre with regard to its current level of resource in respect of potential over-‐stretch and/or over-‐reach.

Participants reinforced this theme in their discussions. They were looking for a clear sense of shared leadership and co-‐ownership between Velindre and its partners to remove any existing barriers or constraints to change.

The immediate priority for Velindre will be to focus its leadership capability and capacity on those priorities that are ‘closer to home’ and over which it has direct control. In parallel it will need to work with LHBs and key partners to develop clarity on system leadership, to build co-‐ownership and to build and maintain momentum in the delivery of other aspects of the Service Model

The Velindre NHS Trust Board will need to agree with Welsh Government and Local Health Boards (LHBs) an achievable leadership/co-‐ownership model and how it will develop over the extended time-‐period.

7.2.2 Geographical scope

What is the geographical scope of the proposals and how do they align with South West and North Wales?

At the core of the SOP are proposals for an enhanced set of services, and fit-‐for-‐purpose buildings and facilities at Velindre Cancer Centre (VCC). The Service Model proposes a range of developments in South East Wales to support the new cancer pathway. However there is a range of linkages with cancer services in South West Wales and nationally within Wales.

The geographical scope of the programme is clearly articulated in the SOP as South East Wales. However, throughout the events a common question was ‘what is the geographical scope of these proposals and how does it align with other work going on across Wales?’ We think it likely that the answer will be different for different elements of the proposals. For instance it might be possible to consider Research and Development and Education and Training to have a South Wales scope initially and potentially a national scope within ten years. The new clinical Service Model might start with being directly tested within South East Wales with spread of learning more widely in the medium term.

The Velindre NHS Trust Board will need to co-‐design and agree with WG and LHBs the geographical staging of the development and implementation of the new clinical Service Model and the supporting elements such as education and training and research and development.

7.2.3 Pathway scope

What is the initial scope of the pathway redesign required to support the core Velindre priorities?

“Ultimately these plans have to be for all of South Wales not just South East

Wales. We are all one network.”

Polling

“A lot of talk about 'scalable' across Wales & that your ideas could be shared – but ideas and good practice need to be developed jointly not delivered in a way that may be seen as paternalistic.”

Polling


The SOP describes ambitions that span prevention and early detection through to living with the consequences of cancer as a long-‐term condition. The SOP also recognises that the proposals for VCC cannot take place in isolation from the development of the wider cancer pathway of which it is part. The ambitions to redesign the pathways around the patient described in the SOP were strongly supported by participants.

The challenge for the Trust is to determine which parts of the pathway have the most impact on the design and implementation of the VCC development and as such need to be priorities for engagement, influence and redesign.

In particular prevention at one end of the pathway and at the other end living with the impact of cancer as a long-‐term condition are projects which need to take shape now but which may need to find leadership from other parts of the system – with Velindre acting as a catalyst and partner rather than taking responsibility.

The Trust Board will need to identify and agree those elements of the pathway external to Velindre Cancer Centre (VCC) that are critical to the VCC development and their plan for co-‐owning/influencing them.

7.2.4 Governance

What is the governance model that will best support and align the development of the Service Model and the pathways that span that model?

The Programme has established effective governance arrangements to lead and deliver the programme elements that are within the direct span of control of the Trust.

The SOP identified the need for wider discussions about governance models that supported implementation of those parts of the Service Model that were not within the direct span of control of the Trust. Again participants identified this as an important theme at all three events.

Many elements of the SOP are outside the direct span of control and accountability of Velindre NHS Trust. Some will have a direct impact on the success of the core internal redesign. The existing governance model will need to be reviewed and flexed, as the programme develops to take account of the opportunities presented to Velindre and its partners e.g. ensuring common standards and alignment of priorities. Within this discussion there will need to decisions on roles, and relationships with other partners and structures such as the Third Sector and the Cancer Networks.

Governance will need to be further reviewed and flexed following discussions with LHBs and other partners as the phasing of the various projects and the implementation of the service model becomes is finalised.

7.2.5 Expectations and engagement

How are realistic expectations set, shared and managed throughout the lifetime of the programme amongst staff, patients and carers and other cancer care partners?

The SOP sets out a very ambitious vision for the future of Cancer Services in South East Wales. Participants were engaged and enthused by that vision. They

“Ambitious plans but need clarity of directions and aims otherwise run the

risk of not achieving clear aims and money spent on most important

frontline services.”

“Communication and collaboration across the network could be difficult to implement and maintain years down

the line.”

“We need to effect and manage change that the Velindre model needs

to be South East Wales model.”


relate to it both logically – they can see and understand the drivers and rationale – and emotionally as they relate deeply to the service they provide and their own personal ambitions for the service and what they have to offer. Yet the implementation of the new Service Model and the redesign of the pathways will take many years. The initial scope may well be limited by the need to focus the available capability and capacity on projects linked to VCC priorities rather than wider pathway redesign.

This places a premium on clarity of scope and priorities, effective communication and engagement from the outset including feedback on progress and lessons learned.

The Trust Board needs to continue to discuss and define its leadership/co-‐ownership role, pathway scope and governance mode with partners. The resulting ‘road map’ must be communicated effectively and regularly if it is to manage expectations and keep its partners engaged for what will be a long journey.

7.3 Key themes – practicalities of implementation These themes relate to the detail of implementation – the practical opportunities and barriers to the development of the Service Model and pathway redesign. There is strong alignment with the challenges identified within the SOP. They give a feel for some of the priorities and concerns of the participants in the events that could be reflected in how the Programme Board frames its priorities.

These are topics that the Programme Board should take an active role in resolving in partnership with the wider cancer delivery system.

7.3.1 Information and IT

This appeared in a range of guises in virtually every group’s feedback templates. Groups strongly supported this theme in the SOP and identified two main dimensions.

• The new Service Model has the patient at the hub. This needs to be supported by a ‘holistic’ care plan, which is available to patients, carers and the health and social care partners involved in supporting them. This requires a single, accessible, updateable ‘view’ of the plan and all the associated clinical and other support activity. Seamless management of the patient across the pathway requires transparency and availability of the relevant information. There is a requirement for a single accessible Cancer Care Plan and Treatment record for each patient with patient articulated outcome goals at its core. This would allow the system to introduce a more specific measure of the proportion of patients who are meeting their own outcome goals.

• Redesign of the pathway requires good quality information in particular on capacity and demand at each stage on the pathway. Without this important data it is not possible to accurately model and monitor flow in the pathway, identify constraints accurately and assess the capacity implications. Improvement activities will need the data to rapidly measure the outcome of planned change test cycles. Ideally this should be derived from the data

“Most of the challenges listed will need a robust IT infrastructure to

support services, able to improve the flow of information and record

electronically all encounters for a patient be that diagnostics, treatment,

communication, or support services. CANISC is not currently robust enough

to support this and discussing with people today it is evident that many people are having to use multiple IT systems to obtain the information required on patients. The issue of

appropriate technological support will be a major one.”

Polling

“Message very much about cancer services across Wales rather than just

Velindre. ”


contained within the Cancer Care Plan and Treatment record. Pathway redesign and management needs to be supported by good quality and timely capacity and demand data.

The Programme Board will need to act as a catalyst for wider discussions with partners across Wales about the options for developing and meeting the requirement for a single Cancer Care Plan and Treatment Record and for improved data for redesign.

7.3.2 Communication and networks

Many groups supported the need identified in the SOP for improved communications and networking within their feedback – partly based on the opportunity that the events had provided for them to network and engage with other partners in the cancer pathway. In particular the benefits were seen as:

• Smoothing the patient pathway • Shared learning and supporting spread of best practice • Reducing the risk of silo working • Helping staff and patients better understand the wider pathway context and

choices.

The Programme Board will need to work with partners and Cancer Networks etc. to agree the priorities for network development that align with the priorities in the Service Model and how to design, implement and sustain those networks.

7.3.3 Partnership and collaboration

Co-‐design, co-‐production and co-‐ownership are central and repeated principles within the SOP. The participants in the events strongly endorsed this approach. There was a widespread desire for improved partnership and collaboration including the more active engagement of patients and carers. We have identified two areas within this theme for the Programme Board to consider.

7.3.3.1 Shifting individual perspectives

Much of the language was framed around better system collaboration or wishing that ‘others would collaborate better with us’. There was less sense of an individual or collective challenge of ‘how I personally take responsibility for collaborating better with others’. There is also a sense in the feedback that there were expectations that others were expected to conform to ‘my model of engagement’ – for example that models of partnership and engagement that work for Secondary Care would work for Primary Care.

Some groups working with the Workforce Education and Training topic made useful suggestions about swapping staff around within the pathway to develop their skills and knowledge. We think this is also important to promote better understanding of the context within which each group is working – in particular Primary Care and community staff.

“Much more communication work and consultation required to get service

model out there.”

“Need to have serious debate about variation in managing care between different LHBs for same condition.

Confusing for staff and patient. Should be evidence based best practice.”

Polling


The Programme Board should promote opportunities for all staff, in Velindre and partner organisations, to take part in exchanges and shadowing across the pathway – in particular in Primary and Community Care settings. This will build relationships, promote altered perspectives and provide a deeper understanding of others’ roles and challenges.

7.3.3.2 Models of partnership and collaboration

The Trust Board will need to make decisions on the geographical and pathway scope of the programme in the short, medium and long term. However a significant part of the programme will involve partnership and collaboration to change elements of the pathway that are critical to the successful internal redesign but which are outside the direct span of control of the Trust.

We suggest it is for the Programme Board to promote a discussion with partners to develop an agreed ‘change’ model that underpins partnership and collaboration – for example the ‘Guiding Coalition’ model described in Kotter’s Dual Operating Model2 might be a useful starting point.

7.3.4 Equity

Participants strongly identified with the SOP theme of equity of access both in terms of geographical access and access to a consistent quality of treatment and support. . There was a keen sense of the need for equity of access – regardless of geography, culture and social status. These are core NHS principles and have been so since 1948. It is strongly reassuring that they remain so. The SOP also identifies this as an important theme. Staff clearly feel uncomfortable that they may be part of services that, by omission or commission, disadvantage some parts of the population – and that they tend to see the consequences of this in terms of poorer prognosis and outcomes.

The Programme Board should consider including an ‘equity impact assessment’ as part of planning for each project within the programme.

7.3.5 Maintaining patient confidence and trust in the new service model

There were three main elements to this theme.

• Firstly there are very strong connotations for patients of Velindre being a ‘place of safety’ or ‘refuge’ in a complex and challenging world where they could connect with people like them and clinicians who would support them. It inspired confidence. The point that some of them made was that if the Velindre brand was attached to other geographical locations then they were looking for the same sense of support and confidence – the design of the outreach or local services should ensure that this explicitly recognised.

• Secondly, there were mixed views on the use of the word ‘Village’ in relation to the Service Model. Patients responded positively to the concept on the whole, whilst there was a mixed feeling from NHS partners. One suggestion was to simply build on the brand recognition and use the

2 Accelerate; John P Kotter HBR November 2012 https://hbr.org/2012/11/accelerate

“The issues are far more complex that initially thought and expand beyond

the banners of just Velindre. Depends on whether you consider just Velindre

or all South Wales.”

“Don’t like the term 'cancer village', Not enough joined up care, services are working in isolation with poor

communication.”


terminology ‘Velindre at Gwent’ linking the Velindre name with service being provided at a geographical location.

• Thirdly it was clear that participants, in particular from LHBs including secondary care clinicians, were not clear from the SOP whether the use of the Velindre brand in relation to the spokes of the Service Model related to the totality of cancer services (secondary and tertiary) or just to the tertiary services provided by Velindre wherever those might be located. There was inevitably a degree of caution expressed about could might be seen as a ‘Velindre’ take-‐over of established local services although this is not the intention behind the SOP.

• The Programme Board should consider the terminology used in describing the services offered i.e. the term ‘Village’ and recommend to the Trust Board whether it should be changed to a similar alternative – ‘Campus’ was one suggestion for the spokes of the Service Model.

• The Programme Board should consider more clearly defining the use of the ‘Velindre brand’ to mean tertiary and complex services provided by Velindre whether at the spokes of the Service Model or at a patient’s home. This would also help maintain the integrity of the Velindre brand in the eyes of patients and carers. This must be considered carefully as it needs to also accentuate the NHS Wales brand and values to ensure both are enhanced and synonymous with excellence.

“Some patients have said they like the care they have received at Velindre CC

mainly because it is a small centre compared to the cold anonymity of

xxx. Are we at risk of losing this positive feedback if we expand?”

Polling


8 Detailed insights from the engagement events This section looks in more detail at the outputs from the EBD and ADE events together with other engagement activities. It identifies the implications for the SOP in each case. The detailed outputs and data from the EBD events are at Annex A and from the ADEs at Annex B.

8.1 Experience Based Design We found that the insights generated by participants were well aligned with the SOP. The strength and value of these events was not only to validate the SOP but also to begin to test the core principles of co-‐design and co-‐production, which are central to the SOP.

During our engagement work with the SOP team, we understood a keen desire to make services as good as possible for patients, but that staff at Velindre had traditionally found it hard to know what people would like to improve. The SOP team told us – ‘we keep asking our patients how to improve. They tell us they are really happy with the care they receive. Patients have asked for things like Wi-‐Fi Internet access and we have made it happen.’

By engaging people in a different way and asking different questions, the Experience Based Design stream of work has started to unlock insights and generate suggestions for improving experience from patients, carers and staff. This will add value both the improvement of current services in the short term and to the design of the new Service Model.

8.1.1 Positive feedback

Without exception, patients and their carers we met at the Velindre Cancer Centre, at the Macmillan Cancer Unit and at the ADE and EBD events were glowing in their praise of Velindre’s staff.

Patients and carers say that the care is the best they could have; they feel lucky to have access to this service and patients reported feeling safe under Velindre’s care.

8.1.2 Areas for improvement

8.1.2.1 Information

Patients and their carers would value tailored information at all stages of the patient journey. Specific examples include:

• Improved access to patient information leaflets while staying as an in-‐patient • Clearer information before the first outpatient appointment to help people

know what to expect • Pre-‐admission information • Discharge information.

8.1.2.2 Patients taking more responsibility for their care plan

Although many patients knew that they have a care plan, they didn’t always know what progress was being made against it or feel a shared responsibility for

“You’re not just a number here.”

EBD patient experience quote

“All the dates merge – it gets a bit hard to keep up.”


“I’m used to the waiting area now, but I don’t like my name being shouted out

to call me in.”


“Anyone sitting in first row can hear the receptionist ask your name,

address and date of birth.”


“I don’t mind the waiting but I don’t like the waiting area.”


“I don’t think we realized how ill he was.”


“You’re thinking…how will we manage?”



it. Patients would like to hold their care plan and for it to become a more prominent feature of their interactions with Velindre and its complementary services, for example patients with a history of breast cancer who go for a mammogram after their treatment is complete

8.1.2.3 Identifying and meeting patients’ needs

Holistic needs assessment is already being promoted across the organisation as part of the Patient-‐Centred Care Pathway work. Multiple stakeholders at the ADE and EBD events stressed the importance of completing an holistic needs assessment at all stages of the patient journey as the key vehicle to identify and meet patients’ needs.

8.1.2.4 IT

Patients and their carers are not only happy for their clinical information to be shared with the different stakeholders in the system; they assume that it already happens. They find it incredibly frustrating when their results are not available to every healthcare professional who needs them.

8.1.2.5 Making use of technology to interact with patients

Patients asked “why is it always a letter? Why can’t you email me about my appointments?” and “why can’t I have my follow up by Skype sometimes?”.

8.1.2.6 Striking the balance – Respect and choice

Occasionally, staff make assumptions about patients, for example automatically calling female patients ‘Mrs’ or not using someone’s preferred name if this is different to their registered name.

8.1.2.7 Striking the balance – the right support at the right time

Patients’ emotional reaction to cancer means that they would like to receive tailored support at the right time for them, i.e. when they feel ready to receive it. They understand that this may be difficult to deliver, but would like to be involved in designing support packages which give people the right information when they are ready to receive it. For example, one patient shared her experience of going to a ‘knowing what to expect’ session before chemotherapy, which she found very helpful. Another patient did not remember being offered this service. Another patient was given written information about what to expect, but couldn’t bring herself to read it before treatment.

Patients would like to see better ‘use’ of cancer survivors to support current patients. They suggested several ways they could support people currently receiving patients ranging from helping people know what to expect before during and after treatment to providing transport to and from appointments.

The phrase “the end of treatment is like falling off a cliff” was used by both staff and patients to describe the experience of completing treatment. Emotional support at this time is particularly important as patients start to establish a new normal and move into ‘survivorship’.

8.1.2.8 Striking the balance – dignity and community

Patients hold strong views about their privacy – they talked about vital, life changing conversations that take place behind curtains rather than in private

“The chemotherapy waiting area is most stressful.”



rooms. They also want the choice and opportunity to talk to and spend time with their fellow patients for peer support. Their suggestion for in-‐patient areas was to have consultation rooms and communal spaces. Staff acknowledged that they found the lack of privacy very stressful as well.

During the outpatient observation at Velindre Cancer Centre, we saw that patients are weighed in an open area. Whilst one man was being weighed, someone he knew (another patient) walked past and made a comment about him having eaten too many cakes this week.

8.1.2.9 Consistency and spreading what works

Patients and staff want to see the same quality, safety and experience standards in place regardless of where care is delivered.

Numerous pieces of work have been initiated to improve the service. These are often happening for one tumour site or in one team or in one geographical location. It would be helpful to map all these pieces of work (many are identified on the ‘ideas’ patient journey in Annex A) and assess their impact and potential for spread to achieve the future service model. Raising the profile of these small-‐scale projects will also generate ‘pull’ from other parts of the organisation and system.

8.1.2.10 Working with patients and carers on future co-‐design

Asking individual patients to suggest improvements typically elicits “I’m happy with my care and the staff are lovely” response. It is when you bring patients together away from the care situation that the insights flow. It is, however, hard to engage patients other than the ‘usual suspects’ to attend group discussions or workshops. You need to allow plenty of time and use a range of ways of engaging people to make this happen.

Working with patients and carers provides rich material but the process can be more complex and appear chaotic; each person brings their own story and experience. This is a blessing and a challenge; many people need time to share their own story before they can participate in a service improvement conversation, but when they do, they often bring a rich new perspective and suggestions for improvement.

The patients who took part in the second EBD workshop were keen to be kept engaged and to have the opportunity to support future improvement work.

8.2 Design Rules themes from the ADEs Key elements of the SOP emphasise co-‐design and co-‐production. The outputs from this activity confirm participants’ support for the importance of co-‐design and co-‐production as core principles in the development and implementation of the new Service Model. By looking at what these principles mean, in their words, from the perspectives of key stakeholders in the Model the SOP principles have been brought to life by participants.

What the SOP says:

‘A new relationship developed with citizens and patients based on the principles of prudent health and co-‐production.’ (2.9.2)

“Sometimes the enormity of it overwhelms you.”


“Sometimes it is hard to know whether to ask. Particularly being the wife –

would they answer me?”



‘Transformation of cancer care based on the principles of co-‐production, prudent health and a more patient led approach.’ (2.12.1)

‘The proposed service model has been developed in accordance with the principles of:

Co-‐production: which enables citizens and professionals to share power and work together in equal partnership, to create opportunities for people to access support when they need it and contribute to social change and transformation. In practice, co-‐production acknowledges that everyone is an expert in their own life and that enabling people to support each other builds strong and resilient communities which help to strengthen the relationship between citizens and service providers, improving outcomes for everyone.’ (2.42.1)

The responses from the activity underline the importance of co-‐design and co-‐production already highlighted in the SOP.

For co-‐design and co-‐production to work effectively the Trust must be prepared to see the opportunities and challenges through the eyes of its key partners and stakeholders. This includes using language that promotes and enables engagement.

It needs to make every effort to ensure that the approach to co-‐design and co-‐production that it adopts embodies the new Service Model – with the patient at the hub. Just as the model describes the objective of delivering care more locally where possible, then engagement in co-‐design and co-‐production needs to happen as locally as possible too.

The Design Rules provide insights into the language and motivations of key participants. By using their language we acknowledge and bring to life their views and concerns rather than using neutral or anodyne bureaucratic jargon.

Our recommendation is that these Design Rules are used to bring the design principles in the SOP ‘to life’ and act as a reference point for all of the projects as they develop the co-‐design and co-‐production elements of their plans.

8.2.1 Design rules from the patient perspective

• It is not just about me and my disease – we need to plan for my care in the context of my family and carers – our physical, emotional and social needs as well as where I live. You call it holistic.

• I am an active participant in the design of the treatment and support I require – work with me to decide what realistic good outcomes look and feel like and then help me understand how best we are going to achieve them.

• Always ensure that I have a clear understandable picture or map of my own treatment journey, what to expect and when and what support I can access – preferably through one point of contact. This applies not just to me but also to my family and anyone who is supporting me through this difficult time who I think needs to understand it as well. You call it a ‘care plan’.

Figure 13 -‐ Design Rules Word Cloud

“It's scary that so many of the anti rules are true – so we know what

we're doing wrong but continue to do it!!!”

Polling

Figure 12 -‐ Example Design Rules capture template


• Please plan the timing of my treatment around my ability to get to where I need to be and back again.

• At all times I want to feel safe and confident in the system that is supporting me and that I am getting the best treatment and care possible – I have enough to worry about as it is.

• If I am lucky enough to survive the first part of the journey then I need the support to help me make the transition to living with the consequences of my illness and not find I have fallen out of the ‘system’ just because treatment has finished.

8.2.2 Design rules from the carer’s perspective

• I am a partner in the care for my loved-‐one and willingly take the responsibility if you will support me to do so. I am an essential part of the design and delivery of the care plan.

• Please ensure I can find what I need when I need it at any time of day or night without having to look in different places and without having to travel miles. One person to call would be good. That person needs to know about my loved one, our situation and me when I call.

• When it comes to the end of my loved-‐one's life, I will need your help and support.

8.2.3 Design rules from the GP’s perspective

• Understand what it is like in General Practice – most NHS care happens in our practices, please stand in our shoes and involve us when designing the support we need.

• You will need to help us tailor the tools we co-‐design, as the populations we serve are often very different and may change rapidly in some places.

• Networking, communication and development needs to recognise the General Practice setting – what works for hospitals will not necessarily work for us.

• We are self-‐employed contractors – if you want us to do more then you will have to work with us to ensure the incentives are properly aligned and recognise that most of us are already working ‘flat-‐out’.

• We need training and education to help us do this – a tool kit for General Practice. But ‘don’t reinvent the wheel’. Learn from what works for General Practice.

• We have a vital role in raising public awareness and the impact of lifestyle choices on health and wellbeing – help us help our patients.

8.2.4 Design rules from the Secondary Care consultant’s perspective

• Please ensure I have the opportunity to be part of the re-‐design of the pathway – I have a lot to contribute in terms of experience and good ideas. My ambition has been and always will be to provide the highest quality of care to achieve excellent patient outcomes and experience.

“If we start saying what can I do rather than what others do, we will be the

best.”

Polling

“Feel positive about the work and about placing patients at the centre

and improving patient care but aware that it is a massive task.”

“The fundamental importance of retaining the current culture/ethos/ branding in the shift to transformed

model of care.”


• Please get the pathway governance aligned so I can focus on delivering the quality care I expect to provide to our patients without worrying about the organisational boundaries.

• Please involve me in the design of the networks and the development of support that will help me deliver the quality of care I aspire to. We need to ensure they are integral to the pathway and not an add-‐on.

• Please enable me to communicate well with others involved with my patient’s care by ensuring we are sharing patient information.

8.2.5 Design rules from the nurse in the community perspective

• Please ensure that governance is aligned across the pathway so I am not always spending time I could be using supporting patients negotiating at the boundaries/interfaces.

• I want to work as part of a team focused on the patient. Please ensure governance development and support reflects this.

• Please ensure I have the opportunity to be part of the re-‐design of the pathway – I have a lot to contribute in terms of experience and good ideas.

• Please involve me in the design of the networks and the development support that will help me deliver the quality of care I aspire to. We need to ensure they are integral to the pathway and not an add-‐on. I want to continue to develop my knowledge and skills and share my expertise with others too. That can be difficult when I am out in the community.

• Please remember that although I will always put the patient first, I also need a break and cannot be available 24 hours day.

• It is important to provide equitable services irrespective of the locality.

8.2.6 Design rules from the Welsh Government civil servant perspective

• Please ensure that you keep the patient firmly at the heart of your design, planning and delivery at all times.

• Please ensure that we can demonstrate the improving outcomes for the time, money and dedication we are committing.

• We need you to ensure that the Prudent Principles are at the heart of your design, planning and delivery.

• We will support and promote integration across the health and care system and develop measures and targets that support this.

“Sometimes the information was so shocking we just sat there.”



8.3 Challenge Topics and their implications for the SOP This section represents a synthesis of the contributions made by participants during the Challenge Topic sessions of the ADEs. These have been summarised and incorporated in the section on the emerging themes for the Trust. The majority of the feedback is well aligned with the SOP but it also provides very useful insights into the priorities of participants and into the way they perceive the opportunities and challenges. It is important to remember that this is what participants have chosen to summarise and synthesise. This is summary of the voice of the participants not Velindre NHS Trust telling other parts of the system what to do.

We have started by synthesising the ambitions and priorities that emerged across all three events and that emerged as common across a number of different Challenge Topics.

8.3.1 How the groups described the benefits

Each group was asked to identify their ‘ambitions’ for the topic they were working on – framed as ‘how we will know when we are being successful?’

This activity allows groups to describe in their own words how they would recognise that the Service Model and redesigned pathways were successful.

The SOP has identified a wide range of benefits for the proposed Service Model. The SOP uses an orthodox benefits realisation approach to the descriptions. Groups have been more ‘eclectic’ and have defined ‘benefits’ as well as elements that might be better described as performance or process measures rather than strictly defined benefits.

In this section we have reviewed the ‘ambitions’ that groups had for the Service Model under each of the Challenge Topics. Many of these ambitions overlap across the topics. We have reviewed and grouped up the ambitions in a series of key themes. We have started to frame these as a driver diagram. The SOP has already articulated a wide range of potential benefits. This exercise gives us an insight into the benefits/outcomes that are seen by participants as most relevant to them.

We have not tried to reframe the outputs into a benefits dependency map. Rather we have tried to represent the key themes identified by participants because these are the ones that they see as important and which they are suggesting represent the ones by which they would be judging progress and success.

Figure 14 -‐ High-‐level ambitions themes


In general there is good alignment between the SOP and the feedback from participants.

The one significantly new suggestion we identified from the data was the suggestion that the system should be judging how well it is supporting patients achieve the outcome goals they have set for themselves (rather than just survival and clinical outcomes) as part of the care plan. This is consistent with the suggestions in the SOP that living with the impact of cancer is the equivalent of a long-‐term condition.

This is the high level view of the main ambition themes identified by the by the groups. The detailed breakdown can be found in Annex B.

Our recommendation is that once the Trust has undertaken the scoping described in the previous section and has undertaken its prioritisation exercise that it then matches these emergent ambitions with the relevant sections of the benefits dependency map.

8.3.2 How the groups saw the priorities

As part of the Challenge Topic task groups were asked to identify the opportunities and challenges that should be a priority for transforming Cancer Services in South East Wales.

We started by identifying the common priorities that emerged from groups tackling the same Challenge Topic in the three ADEs. These are detailed in Annex B.

There was considerable overlap of priorities across the Challenge Topics. We examined these common priorities to identify themes that spanned topics.

This is the high level view of the main priority themes identified by the groups.

In Annex B we break out each individual theme into its components with some additional grouping to reflect slightly different perspectives on similar priorities. This preserves some of the richness of the contributions.

This provides a good insight into what participants thought were most important for the programme to be pursuing in the early stages.

Our recommendation is that once the Trust has undertaken the scoping described in the previous section that it identifies which of these priorities are in-‐

Figure 15 -‐ Priority themes


scope. It should then undertake a prioritisation exercise to refine the list and then use these to inform the development of the programme plan.

8.3.3 Improving clinical outcomes

The outcomes described within the SOP correlate closely with the ambitions the participants described for this topic. It was worth noting however that a distinction was made in one group between ‘patient satisfaction’ and a more specific measure of ‘the proportion of patients who are meeting their own outcome goals articulated within their care plan’. We think that this an important insight and a measure that if developed has the potential to really drive development of both patient-‐centred care planning (the patient as ‘hub’) and continuity of care and support across the patient pathway.

Closely linked to this was a priority that emerged across most of the groups working on this and other challenge topics. We have articulated it as the development of a single patient care plan and treatment record with patient articulated outcome goals at its core.

There was a strong focus by participants in the groups and across all events on the importance of prevention, screening and early detection/diagnosis in improving outcomes.

Participants also supported the focus within the SOP on living with the impact of cancer as another long-‐term condition. There was recognition that outcomes were not just about the success of treatment but also about the quality of life once the cancer was in remission.

Prevention, screening and early detection/diagnosis are covered in a number of areas within the SOP as is the impact of living with cancer. We would suggest that these have their own sections within future documents as specific projects. They are not within direct scope but do have a long-‐term impact on the viability of the Service Model. As such there is the opportunity to highlight them as a key dependency for the wider system to address with Velindre engaging as a partner rather than in a leadership role. We suggest that these sections are co-‐developed with the relevant system partners who have this within scope of their direct responsibilities.

There was a general view that data on outcomes was limited in terms of availability, timeliness and quality. In addition there was a gap in measurement of outcomes based on patient and carer goals rather than just technical one and five year survival rates. These will be important in assessing the effectiveness of support to patients living with the implications of cancer as a long-‐term condition as well as a more rounded evaluation of the outcomes of specialist and complex treatment.

Outcomes will be emotional as well as physical. As with a number of other

“The impact cancer has on the lives of people. We need to focus more on the

wider impacts, not just clinical outcomes.”


groups it was observed that one of the emotional outcomes that patients and carers were looking for was the feeling of support and confidence in the system that was supporting them. Participants rated the Velindre ‘brand’ strongly for that sense of safety and confidence and that is closely linked to the place that is Velindre Cancer Centre. As the new Service Model develops Velindre will be increasingly associated with a service and not just a place. The Trust will need to measure and track confidence in the Velindre brand as an outcome as the new model is implemented.

8.3.4 Reducing the risk of cancer

Participants were in broad agreement with the thrust of the SOP. There was a strong acknowledgement that the service would struggle to meet demand if there were not significant changes not just in awareness of the implications of lifestyle choices but also in the behaviours that increase the level of risk.

Participants observed that every contact the NHS had with patients and carers was an opportunity to improve awareness of the risks of lifestyle choices and what could be done to reduce those risks – not just in relation to cancer.

There was also a common thread that there could be better linkages with school education as well as improved tailoring of approaches to reflect different cultural perspectives.

Carers represent a vital resource in the partnership that supports patients through their cancer journey. Care plans should explicitly consider the need to provide health promotion advice and lifestyle support to carers so they can maintain their own health and sustain an active role in supporting their loved-‐ones.

A number of participants observed that there was both an opportunity and an issue in relationship to staff being credible and authoritative role models for patients and carers. Staff who themselves are role models for healthy lifestyle choices may be more credible when providing advice and support to patients. In addition a healthy workforce has lower levels of sickness and absence and higher levels of retention and satisfaction. Active role modelling of lifestyle choices should be part of future workforce education and training objectives.

The SOP highlights the importance of lifestyle awareness and health promotion activities across a number of different sections. We suggest they deserve their own sections within future documents as a specific project. They are not within your direct scope but do have a long-‐term impact on the viability of the Service Model. As such Velindre has the opportunity to highlight them as a key dependency for the wider system to address with through engagement as a partner rather than taking a leadership role. These sections could be co-‐developed with health promotion, public health and third sector partners.

“Public health? Whole population problem, not just cancer patients

(whom are part of the population), but yes there are opportunities for

MDT/cancer patient health improvement EFFECTIVE

interventions/referrals. As GPs already do. Remember health inequalities.”

Polling


The SOP could be more specific about the opportunity for better evaluation of health promotion and education activities within the research and development proposals including the potential role of Public Health Wales in setting standards and leading evaluation and research on this topic in partnership with Velindre NHS Trust. At least one group observed that there needed to be a focus on understanding what worked in terms of health promotion and that programmes that did not have an evidence base or observable impact should cease allowing reinvestment in approaches that had a reliable evidence base.

The SOP recognises that living with the impact of cancer is equivalent to managing a long-‐term condition. Health promotion and lifestyle advice support is an integral part of the management of any long-‐term condition and cancer is no different. There is an opportunity for future plans to be more explicit about this as a priority. There may be opportunities for research into the effectiveness of different approaches to health promotion for those people who are managing cancer as a long-‐term condition.

Any projects within this area should recognise the need to be adaptable to cultural and social context.

8.3.5 Improving patient flow

The need to plan for and manage patient flow through the new pathway does not appear explicitly within the SOP but did emerge from the synthesis of the pre-‐ADE survey that then translated into a Challenge Topic. As a result, groups identified some additional qualitative benefits that are not explicitly identified within the SOP. These related to patient and staff experience of the pathway:

• Improved patient feedback on their experience at key points in the pathway (not just ‘satisfaction’ or measures of ‘gratitude’)

• Improved staff feedback on their experience at key points in the pathway.

Throughout the discussions participants highlighted the apparent lack of good quality data to support effective modelling, planning and monitoring of patient flow across the pathway as a whole. This was required to underpin effective co-‐design and co-‐production as part of continuous service improvement.

There is a lack of evidence to support effective capacity and demand modelling and flow management across the pathway to underpin prioritisation of resource allocation. This is needed to identify true capacity constraints and the implications of changes to the pathway on upstream and downstream services It is also an essential part of effective system leadership.

Pathway mapping using the Experience Based Design approach has been part of the engagement project. We would suggest that the next stage should be to identify the key flow measures at each stage in the pathway to provide evidence on performance and to act as measures for change projects. This

“If the plans for care closer to a patient's home are to work then

ownership of the patients throughout their cancer journey will need to be

clearly defined to all involved, including the patients. Clinicians will

have to leave their centres to travel to 'cancer villages'. This will need a

culture shift as we all prefer to have patients come to us.”

Polling

“It's a good model, I just hope that we are thinking forward 20 years + not just 5. This seems to happen when dealing with the NHS, that's why it

dates so quickly.”

Polling


will also be needed to provide more detailed evidence to support the outline business case.

Flow through the current and future pathway would be improved if patient, referrer and clinician had a better ‘map’ of the pathway journey, where they fit within it and the stage the patient has reached. We suggest that part of the Cancer Care and Treatment plan could be a printable personalised ‘route map’ showing the pathway stages, where the patient is at any stage in the pathway and future appointments already scheduled. This might also help with sequencing decisions made by Multi Disciplinary Teams (MDTs). Indeed one suggestion is that part of the MDT role would be to review progress on the planned pathway as a whole rather than just focusing on treatment planning.

There was less clarity on where the responsibility rested for leading on this topic although the emerging view was that the totality of the pathway was the responsibility of LHBs in the planning and commissioning roles. There was also an emphasis on the need for individual organisations to take responsibility for the pathways within their organisations and in doing so for close coordination with those elements of the pathway on which they had a critical dependency but which were outside their direct control.

There are cross linkages from this topic to education and training – ensuring staff have the basic improvement skills to redesign pathways to improve flow; to continuous service improvement which requires a continuous improvement approach and hence constant review of patient flow in the system and to access where consistency and reliability are important to patients and carers.

8.3.6 Improving access

There was strong support for the concept of the patient as the ‘hub’ of the new Service Model. Underpinning this however was a very strong theme of equity of access to consistently high quality services and not just improved geographical access. Many participants saw the Service Model as an opportunity to build consistency of service regardless of cancer site, geography or staging.

Reductions in variation in access (geographical and in quality and consistency) were seen as a desirable benefit. Future work should explore how consistent standards are achieved and monitored within the new Service Model.

There was recognition that improvements in patient flow to reduce complexity in the patient journey would also improve accessibility. It would also bring more clarity to the discussions around the choices to be made between geographical accessibility and the need to achieve economies of skill and scale by concentrating some specialist and complex services.

There was also a useful discussion on the definitions of specialist and complex interventions and the shift over time of treatments that were originally complex but that now have become more routine if still requiring a degree of

“Is a cancer village a physical location or a virtual network?”

Polling

“Just remember that not all patients want to be treated at home. The

system has to be flexible enough to meets needs of all.”

Polling


specialist input. The implications are that pathways need to be able to evolve over time in response to changing practice and that as a result should not necessarily be tied to specific sites or organisations. So a pathway is essentially a treatment and support journey that is not necessarily tied to any physical configuration of services described by the Service Model.

Whilst the ‘Village’ description received mixed views many participants saw the value of building on the Velindre ‘brand’ for complex care delivered within the Model whatever the geographical setting.

There was consistent reference to the need for timely access to a GP both for early referral for diagnosis and as part of the long-‐term condition management of cancer. Much of the discussion highlighted the need for the SOP to have a clearer description of the relationship and role of Primary Care within the Service Model. This may be an opportunity for co-‐design with GP clusters and the GP leads within the Cancer Network.

Some groups asked that there be more clarity about where the holistic needs assessment that underpins the Cancer Care and Treatment plan fits in the pathway and who is responsible for initiating and maintaining the care planning process. As we have previously described, the process should provide patients, carers and clinicians with a simple comprehensive picture of the pathway – a personal map – an essential part of the patient care plan including ‘what matters to you?’

Participants described the need for a workforce with the skills to deliver care closer to home physically or virtually and who can deliver the improved access model with skill and confidence. This is a clearly described objective within the SOP for Velindre Cancer Centre staff but there are opportunities to extend this to other staff across the pathway. If routine cancer support and care is not available ‘closer to home’ then it likely that complex care cannot be delivered ‘closer to home’ however skilled the Velindre Cancer Centre staff.

8.3.7 Continuous service improvement

Participants recognised the need for continuous service improvement as being important not just for service quality but also as critical to staff morale and retention. Most of the Velindre Cancer Centre staff that were part of this discussion were clear that the system needed to provide them with the space and support to allow them to do this effectively. This was something they felt was not routinely embedded in current services due to the pressures of delivery. Successfully addressing this would contribute to the core benefits of improved staff experience and thence to improved recruitment and retention.

Groups also highlighted the opportunity to develop and embed a consistent approach to service improvement across the whole of the cancer pathway. This would ensure that different parts of the pathway could work together using common

“Stop the "push system" by giving patients more control over their own

care needs. Remove the culture of "helplessness" in patients. Access to services offering an experience and

knowledge of mindfulness can encourage patients to feel more aware of and in control of their own needs.”

Polling

“Learnt about the new concept of Cancer villages. My concern is with

aging population. Patients don’t just have cancer, need to be near other

specialties.”


methodologies. One suggestion was that MDTs not only take a pathway overview as described elsewhere but that they also form the focus for the development of ‘leadership for improvement’ skills.

Underpinning continuous service improvement are the skills and capacity that staff and teams require combined with the context that allows them to use those skills – to learn from failure as well as success. Important skills to pathway redesign are process mapping, capacity and demand analysis, measurement for improvement (Run Charts and Statistical Process Control) and change models such as PDSA. Whilst the SOP highlights the objectives of continuous service improvement and the aspiration of co-‐production it is not specific about the core skills and leadership capabilities that are required to make this a reality. We suggest that ‘Leadership for Improvement’ should be a fundamental part of the workforce education and training plans – this is what enables ambition to be translated into real visible change on the ground.

Other parts of this report have already identified good quality information as important for different aspects of the programme. Internally within Velindre Cancer Centre there needs to be a focus on developing the information infrastructure that will support continuous service improvement and not just the monitoring of performance.

Groups identified the need for channels for the rapid spread of learning and best practice as part of basic underpinning infrastructure of continuous service improvement. Networks were highlighted as an important part of building a learning culture and acting as a channel for the spread of good practice.

Velindre NHS Trust should explore with the South Wales Cancer Network how the Network might provide a channel for the development and spread of continuous service improvement skills and learning.

It should also take the opportunity of the next stage of the business case development to co-‐design its own internal learning network model with its own staff.

8.3.8 Organising for sustainable delivery

The delivery and sustainability of the Service Model and the pathways that cross it is outside the scope of accountability of any single organisation. There are a range of partners all of whom hold accountability for different parts of the pathway. High levels of collaboration and integration at both planning and delivery levels are required. The SOP raises this as a challenge and the discussions during the events have reinforced this theme and fully support the thrust within the SOP. We believe that is a priority for the Trust Board to initiate if not lead a debate on the governance structure that will ensure sustainable delivery and keeps developments across the pathway aligned.

There were a range of other suggestions and views embodied in the group discussions both within this topic and in other topics. For example there were

“Cancer care is one area in healthcare provision that can lead to

improvements due to the dedicated people working within it.”


questions about the potential role of the South Wales Cancer Network in providing an overview of alignment and priorities if not actually becoming a locus for governance – described as being the potential focus for a ‘Cancer Board’.

Participants in discussions highlighted the need for high quality information and IT to underpin the pathway and provide the data that supports transparency and informed governance. In the context of this topic this translates into opportunities for system level governance structures to be able to identify and take ownership of ‘turn-‐key’ developments such as a combined cancer care plan and treatment record.

Participants also identified the need for staff to have a clear and consistent view of the pathway as a whole and the different roles within it as a way of ensuring sustainable delivery. A suggestion made by the groups to support this was the development of opportunities for shared workforce development across the new model/pathway so that all staff have a clear picture of the pathway in their minds.

There are strong linkages to other Challenge Topics, which provide opportunities for developing greater resilience and alignment to support sustainable delivery. For example workforce education and training that extends across the whole pathway creates the working relationships and networks that improve communication, builds stronger relationships and allows greater insights into other elements of the pathway.

8.3.9 Workforce education and training

There was strong support for the vision and objectives for workforce education and training described in the SOP. Some participants felt that this part of the SOP felt more coherent in structure and intent than a number of other parts of the document.

There are strong linkages to the other Challenge Topics. Most participants saw workforce education and training as an important vehicle to deliver consistency and sustainability across the Service Model and its pathways, with Velindre acting as the hub for workforce training and development across the system. Multi-‐disciplinary training would also improve networking and provide opportunities for a greater understanding about other parts of the pathway.

Groups also highlighted opportunities for patients and carers to be part of delivering aspects of the new curriculum. Some suggested that the workforce education and training remit should also encompass training for patients and carers – for example joint staff, carer and patient training on new home based techniques of care such as chemotherapy, remote monitoring and telemedicine.

“Getting staff, patient and carers together to share ideas re; best

practice/ service model and listening to ideas/ creativity.”

“Need to improve communication between stakeholders.”

“How there is so much we could share, about service developments if could be implemented – avoiding variation for

variation’s sake.”


The increased involvement of patients and carers providing and participating in education and training provides opportunities for the third sector to be more closely involved in curriculum development and delivery.

Clearly high quality education and training (and the time to undertake it) is a strong element in the improvement in recruitment and retention of staff – how staff feel about the service and their ability to provide the quality of service they aspire to.

Education and training was confirmed as central to developing new roles and providing the training that reflects the new Service Model – training for the future service and not the current service. At the same time staff recognised the reality that cancer patients can present with an acute illness to local services and that education and training needs to extend beyond those staff who were part of the cancer pathway. Participants welcomed the SOP’s focus on living with the impact of cancer as a long-‐term condition. This was also seen as an opportunity to develop a curriculum for Primary Care and community staff to enable them to better understand the needs of patients and carers in local settings.

Participants also highlighted opportunities for developing new models of training delivery that were aligned with the features of the Service Model. For example use of virtual techniques such as web based video conferencing will add value by increasing staff familiarity with the use of technology in delivering care. It will also support the dispersed workforce that will often be a feature of care being delivered closer to or in the patient’s home.

8.3.10 Delivering excellence in research and development

There was strong support for the vision described in the SOP. Given the strength of Velindre in research it is not surprising that this section in the SOP was regarded as a coherent and powerful overview of the opportunities and challenges. Its influence on the ability to recruit and retain high quality staff was repeatedly raised.

A consistent theme throughout the discussions was the need for improved awareness of current and planned trials. For example groups highlighted the need for improved patient awareness of trials approaches and methodologies – the opportunities and risks. They identified the third sector partners as potential advocates for patients providing advice and support to patients and carers as they make decisions about entry into trials. Key measures of success were seen as the number of staff and patients on the pathway participating in research.

Participants also highlighted the opportunity for improving relationships across the pathway by aligning research and development with the pathway and Service Model more explicitly. This included commissioning research that might


look at the effectiveness of public health interventions in reducing the risk of cancer as well as research into living with cancer as a long-‐term condition.

There were also some suggestions that there might need to be an improved focus on transfer/translation of research into practice including research into adoption and spread. A key measure would be the time taken for outcomes of research to become common practice within the pathway.

A number of people highlighted the opportunities for partnerships with industry and contributing to economic development within Wales.

There was some discussion in the groups about the underpinning model. In most cases this was not seen as all research being undertaken by one organisation but the need to find a model that aligned and coordinated research in support of the cancer pathway and service model.

8.3.11 The principles of Prudent Healthcare

The groups who worked on this topic acknowledged that the SOP needed to be underpinned by principles of Prudent Healthcare and they agreed that as framed the SOP would deliver against those principles if effectively implemented.

Participants had some problems with the term itself, which they felt was confusing when viewed as a ‘stand-‐alone’ topic. As a result and unsurprisingly the group discussions were very wide ranging and overlapped considerably with the other challenge topics. The Programme Board should ensure that there is a consistent understanding of Prudent Healthcare within the context of the Transforming Cancer Services programme

It was also noticeable that many of the conversations in other groups implicitly incorporated the core principles of Prudent Healthcare, which should be regarded as reassuring.

For example groups explored how Prudent Healthcare principles could be embedded in the design of workforce education and development. Others discussed how the principles could be used to help prioritise research and evaluate the outcomes of research projects before making a decision on wider adoption.

Discussions on value for money aspects of Prudent Healthcare were common with some participants highlighting that cancer already receives more money proportionately than any other disease. They suggested that there needed to be improved transparency on spending across the pathway and on the underpinning elements of research and education and training.

Other topics that emerged included reduction in variation within the Service Model based on standardised pathways and interventions; greater use of modern communications technologies to support remote care and monitoring of opportunities for larger scale procurements of equipment and software.

“How difficult task this is going to be – sometimes it’s all a bit

overcomplicated.”


8.3.12 Strengthening leadership

A clear and overarching theme emerging from the discussions on this topic was the need for a leadership model that promoted partnership and embodied the principles of co-‐design and co-‐production described within the SOP. There was also a strong emphasis on the role of leadership/co-‐ownership in enabling networks and providing opportunities for learning and sharing. This aligns completely with what the SOP says about leadership.

Groups also reflected on the current complex organisational relationships and the number of different networks and groups that co-‐exist around the cancer agenda. There was a view that an early leadership task was to simplify, align and make the connections within this complex environment.

Participants also emphasised the role of leadership in acting as champions for, and supporting patient and carer engagement in, co-‐design of the Service Model. Some suggested that Velindre NHS Trust has the opportunity to be a leadership role model within the new context: testing, harnessing and embodying the principles and practicalities of co-‐design and co-‐production with staff, patients and carers and key partners.

Most participants, in particular those from outside the Trust, welcomed the initiative that Velindre was taking but were unclear about the mandate the Trust had to influence or lead those aspects of the SOP that lay outside its direct control. This included the geographical scope of that mandate – was this just about South East Wales or was there a much wider role to be occupied at a national level as described by the Welsh Government in its response to the draft SOP? This was a theme that also emerged in a number of the other topics and represents an opportunity for the Trust Board to take the lead on discussing with other Boards and partners as well as the Welsh Government.

8.4 Feedback from other meetings Representatives from the TCS Programme Team and Outhentics attended three other pan-‐Wales meetings were the SOP was a formal part of the agenda. The themes from these sessions were very similar to those that arose from the other engagement activities. There was support for both the assumptions and the Service Model although as might be expected from groups with a remit across Wales the majority of the discussions were focused around alignment and governance.

The SOP was discussed as a formal agenda item at three pan-‐Wales meetings:

• Directors of Planning • Directors of Nursing

“Very informative. Good to feel involved. However how many of the ideas are realistic? Maybe we should

try and solve issues in the current services before undergoing a huge

overhaul like what is being proposed.”


• Medical Directors

The themes that emerged from these sessions are very similar to those from the other engagement activity – although with a focus on wider connectivity and alignment as might be expected.

The context and drivers described in the SOP were recognised and endorsed with the scale and priority of the challenge posed by the growing incidence and prevalence fully acknowledged. As one participant put it ‘we agree with the why but the important thing is the ‘how’.

Governance and alignment with each LHB’s Integrated Medium Term Plan (IMTP) were seen as a priority. This was seen as an opportunity across Wales – both to coordinate rather than compete and to test a model in SE Wales that could be replicated across Wales. A number of participants talked about the need for clinical leadership (and in particular Medical Directors) in making the connections and providing leadership across Wales. The need to make collective decisions on priorities for investment was seen as important – to ensure these reflected the priorities and the opportunities to make the most of the any new money as well as money already invested within the service and to ensure the financial consequences for each part of the system were fully understood.

The language of co-‐design and co-‐production were seen as helpful both in terms of patient engagement and in the way partnerships might work together on developing and testing the Service Model.

More effective coordination of research was supported although there was discussion about the role of the Velindre Cancer Research Institute within the research network. Some participants were keen to retain the separate identities of their own research facilities in order to support recruitment and retention and to protect funding but acknowledged the importance of good coordination both on topics, priorities and trials. Shared decisions on research priorities were seen as important – as one participant said ‘what gets researched gets implemented’ and ‘our research priorities do not necessarily reflect our service priorities’

In all meetings there was a discussion about the geographical and pathway scope of the SOP. The use of the ‘Velindre Cancer Village’ terminology triggered a number of responses. Whilst participants supported the Service Model they were more cautious about the branding. They were often unclear whether the Velindre brand was being applied just to tertiary and complex services wherever they were being provided or whether they were being applied also to specialist services currently provided by secondary care providers within the LHBs.

“What gets researched gets implemented but our research

priorities do not necessarily reflect our service priorities.”

Medical Directors meeting


9 Next steps for engagement This section makes recommendations for how the Trust could build on the engagement project. In particular how it equips and supports staff to make co-‐design and co-‐production a reality in both everyday service delivery and in the design of new services and pathways.

This project has demonstrated both to Velindre staff and other stakeholders that the Trust is prepared to think differently about how it engages in co-‐design and co-‐production. It is acting out and testing out the core principles it has described in the SOP and in doing so has engaged over 400 participants in an intensive review of key elements of the SOP in a short period of time. This is now a good time to pause, reflect on the learning from that process and frame the next steps in a continuing dialogue.

9.1 Confirming the scope The next steps in the engagement programme need to be framed by the scope of the proposed development. We recommend that the Trust now takes the opportunity to reflect on the information contained within the report in relation to the SOP in particular to clarify, based on the feedback it has received, which elements of the pathway and Service Model are:

• Within the direct control of the Trust and of these: o which elements of the current pathway are a priority for

redesign and testing prior to incorporation in the new build o which elements of the current pathway are a priority for

redesign and testing in new settings consistent with the proposed Service Model.

• Not within the direct control of the Trust but which are critical short and medium term dependencies for achieving the pathway redesign and testing that is within the direct control of the Trust described above. These require prioritisation, active engagement and resource commitment by other parts of the system and will need to be contained within a formal programme governance structure. This might include turn-‐key issues such as IT and information systems that support the full pathway.

• Not within the direct control of the Trust but which in the longer term have a significant influence on decisions such as capacity. These fall within the accountabilities of other partners and need to form part of their longer term planning, aligned with the new Service Model. This may be something that is coordinated and aligned through normal planning mechanisms.

• Within the direct control of the Trust and which will, with some repositioning, allow the Trust to build networks and influence and support the implementation and sustainability of the Service Model. These are primarily education and training and research and development.

This scope needs to be clearly described and communicated internally and externally and based on a very practical assessment of what is achievable within the resources that are available above and beyond that which is required to be able to continue to deliver the current service. Scope overstretch has risks not


just for achievement of the development ambitions but also for delivery of current services. An important early decision is to make clear decisions on what proportion of resource is committed to each of the three areas described above.

Redefining the scope into those four areas based on the feedback from the engagement programme will allow Velindre to better manage expectations across its stakeholders and partners. In particular it will support a better definition of roles and responsibilities of the different pathway partners.

9.2 Building a formal engagement programme A formal engagement and communication plan needs to be developed to underpin the next stages in the process and build on the experience of this stage of the project. The guiding principles are:

• Using methodologies that embody co-‐design and co-‐production – developing new ‘habits’ of engagement

• Embodying the Service Model concept of ‘patient as hub’ and complex services ‘closer to home’ by bringing the engagement to the patient and carer and to more local settings rather than vice-‐versa

• Reflecting the revised scope to ensure realistic expectations of what is achievable

• Tailoring activity to engage harder to reach groups of stakeholders such as Primary Care

• Building a carefully planned rhythm of engagement aligned with the key stages in development programme.

We suggest that as well as the normal ‘push’ communications channels of internet, intranet, social media, reports etc. that the Trust adopts two core methodologies that have already been experienced as part of this engagement project.

Experience Based Design (EBD) has already been used successfully to engage staff, patients and carers in the more detailed assessment of pathway redesign priorities. It is a methodology that aligns well with the process mapping stage of any pathway redesign project – identifying the emotional touch points at each stage of the process. When the key stakeholders in the pathway are engaged it embodies co-‐design and co-‐production and also helps build powerful new relationships. It could be a core component of your redesign methodology and a mandatory stage in any of your redesign projects.

Accelerated Learning Events (ALE) are a version of the methodology used in the three main engagement events. Run every 6 to 9 months (depending on the programme ‘tempo’) for the core redesign project teams, Programme Board and key partners/stakeholders they could be used to share progress and learning, uncover dependencies, barriers and opportunities and form the platform for scoping and confirming the next steps in each project. They are sponsored by the Programme Board and provide an opportunity for improving visibility and maintaining momentum across the programme.

9.3 Equipping staff with the skill to engage The challenge for the Trust now is to take the new co-‐design and co-‐production approach and make it a new ‘habit’ embedded within the ‘way we do business’.


This will involve training and coaching staff to use different engagement methodologies such as EBD, ADE/ALE, Open Space, World Café and ‘Scan, Focus, Act’. The aim should be to develop confidence in these techniques until it becomes a productive habit not a step into the unknown. Our experience is that it takes time, reinforcement and committed supportive leadership for these techniques to become the new habits. An analogy is persuading people to make different lifestyle choices to reduce their risk of cancer – it is all too easy to fall back into the old habits.

There could be an opportunity for workforce education and training to broaden its offer and provide a module that provides staff with the skills and confidence to act as catalysts for co-‐design and co-‐production.

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