This is a series of examples of ‘4Pi in Action’. In each one we aim to show how we have worked with different individuals, groups and organisations to implement the 4Pi standards, or how organisations and groups have used 4Pi to inspire their own processes or toolkits in order to promote and enable the meaningful involvement of service users and carers.
“Earlier this year, we launched our first co-production framework. For 2021’s National Co-production week, Senior Co-production Officer Abby Meadows (email@example.com) reflects on key learnings from creating it with those with lived expertise of financial hardship.
Any framework about co-production itself must be co-produced. For the team at Turn2us, that demanded a new way of working. Last July six of us (three staff and three co-production partners) formed a working group whose task was to create a framework for co-production and involvement at Turn2us.
Guided by NSUN’s National Standards on Involvement, we designed and delivered four workshops to staff and co-production partners. Our workshop findings became the foundation of our new framework for co-production and involvement at Turn2us.
Key learning 1: Trust and authenticity are crucial for a safe space
Creating a safe space is a popular phase in our line of work, and it’s one of the four key principles listed in the framework. But often it’s unclear what a safe space looks and feels like. When reflecting on the seven months of working together, the co-production working group felt that we did create a safe space. So what were the indicators of this?
• There was positive confrontation. Staff and co-production partners alike trusted one another enough to have respectful disagreements.
• There was accountability. We were rightfully challenged when decisions had been made by individuals rather than as a group.
• There was creativity. people could bring their authentic selves to the sessions.
• There was sharing of responsibilities. Co-production partners took ownership of tasks, such as leading on many aspects of the workshops, facilitating breakout rooms and creating video content. We had to trust each other for this to work well and not feel tokenistic.
Key learning 2: Don’t obsess over ‘perfect’ decision sharing
During the seven-month process of building the framework, there were many times when we shared the decision making responsibilities for even the finest details. For example, the ‘co-production purpose’ was drafted and finalised between myself and one co-production partner, with inputs from our CEO plus the Head of Insight and Impact.
Sharing decisions to this level matters and feels powerful in the moment. However, it shouldn’t be seen as the best and only measure of quality co-production and involvement. Co-Production should also be about how valued and heard people genuinely are and how much weight someone’s input really has on the work. The test of this are the times when co-production partners are not in the room. Similarly, not all co-production partners want to be involved in the final decisions – for instance, spending time drafting and redrafting a purpose doesn’t suit everyone’s interests or skill sets.
Key learning 3: It can always become tokenistic
That said, there will always be a risk of what I call ‘performative co-production’. I would define this as bringing someone into a space, without adequate information and usually for short amounts of time, just to tick the box and say ‘We listened to someone with lived expertise, we don’t need to talk to them again’.
This risk never goes away and Turn2us must always be honest about and mindful of it. Our job is to faithfully draw from the lived expertise and harness the passion of people in such a way that our work together, whatever the level of involvement, feels valuable for everyone.”
Mental Health in Bristol
Bristol Mental Health: A new mental health service for Bristol
In 2014, Bristol’s mental health services were entirely re-commissioned. Bristol Mental Health is a group of 18+ public and voluntary sector organisations who provide mental health services for the people of Bristol. www.bristolmentalhealth.org
Bristol Mental Health has a service user and carer board to ensure that service users and carers are involved in all aspects of the services at all levels and at all times. The board meets monthly and represents all services and service users. The aim is to act on feedback and use their personal experience to influence decisions and service design and get problems solved quickly. The terms of reference for the Board states that it ‘seeks to reflect national good practice’ through reference to the 4PI involvement standards. The terms of reference outline the Purpose of the board, the membership (Presence) and tasks of both the board and of individuals within it (Purpose/Process). The plan is to evaluate the progress and effectiveness of the board on a regular basis informing Impact).
Bristol Mental Health identify the following principles as underlying their work:
- Recovery and Wellbeing
- Psychologically informed
- Equality and Diversity
Bristol Clinical Commissioning Group (CCG)
Bristol Mental Health is funded by Bristol CCG. The CCG and Bristol Mental Health work with the newly formed user-led network in Bristol: Bristol Independent Mental Health Network (BIMHN).
For further information contact: Glenn Townsend Glenn.firstname.lastname@example.org
For BIMHN contact: email@example.com
Putting perspectives from lived experience into primary care research
The McPin Foundation exists to transform mental health research by putting the lived experience of people affected by mental health problems at the heart of the research agenda and the methods that researchers use. They do this by:
- conducting user-focused research;
- building the capacity of others to conduct user-focused mental health research;
- seeking to influence and improve methods, practices, and decision making in mental health research to ensure these maximise benefits for people using services.
PARTNERS2 Research: the aim of the research is to develop and pilot a trial of primary care-based collaborative care for people with severe mental health problems, funded by the National Institute for Health Research (NIHR). It is a partnership between the University of Birmingham, University of Exeter, Plymouth University, University of Manchester, University of Warwick, Lancaster University and the McPin Foundation.
Patient and Public Involvement: McPin is providing the PPI (Public and Patient Involvement) expertise to the project in a number of ways:
- A paid PPI coordinator working across the 3 study sites to ensure that lived experience benefits the whole study;
- Embedding PPI in every work stream of the project through advisory panels and PPI researcher roles;
- Assessing the impact of PPI to know, and to show, how using insights from lived experience makes a difference to the research outcomes, and why it makes a difference.
4Pi: McPin has used the 4Pi framework to assess their plans for PPI in the design and development of the programme. They also plan to use the 4PI framework to evaluate the impact of their PPI approach and strategies on the research project, ensuring that they assess principles, purpose, presence and process to measure the impact. For further information contact: Ruth Sayers. Email: firstname.lastname@example.org
National Institute for Health Research CLAHRC North West London
Collaboration for Leadership in Applied Health Research and Care North West London is one of 13 CLAHRCs across England. They are funded by the National Institute for Health Research (NIHR) to speed up the time it takes to put evidence into practice in healthcare to improve patient care. CLAHRC Northwest London takes a quality improvement approach, which means supporting people to establish multi-disciplinary teams, and use a systematic approach to make evidence-based improvements in healthcare. It is hoped that through a systematic approach, the improvements being made will have a greater chance of long-term success.
Patient and Public Involvement (PPI) is part of this systematic approach to Quality Improvement. It is integral for teams to involve patients, as team members and in a variety of other ways in the improvement project. However, healthcare professionals have struggled to know ‘how’ to involve patients/public.
Patient and Public Involvement (PPI): CLAHRC NWL’s PPI team informally introduced the 4PI National Standards to improvement teams in 2013, to help teams to plan their involvement. It was well received by healthcare professionals who found it provides direction and a clear way to frame their PPI plans. People felt it was a straightforward approach covering aspects that people often don’t think about or plan. This lack of planning can lead to confusion about the roles of patients/public and their involvement. It can reinforce PPI being done because it is expected, as opposed to understanding the value of involving patients/public and the contribution this can make to healthcare improvement.
The cyclical approach of 4Pi complements CLAHRC NWL’s wider systematic approach for quality improvement, as that also emphasises reflective learning and continuous improvement through planning and then testing these plans out in practice. This is one of the many strengths of 4Pi as healthcare professionals and researchers who are new to involving patients/public often believe it will work immediately. If it doesn’t, they become disillusioned with PPI as a whole and may believe it ‘doesn’t work’. 4Pi reminds people that PPI needs to be a planned process, with adaptations made based on what has been tried and tested.
Future plans: CLAHRC NWL has now started to adapt 4Pi so that it provides an easy to use facilitated framework for our project teams. They have noted that PPI is stronger and more sustainable if it is part of a facilitated process, but this requires a trained PPI facilitator. They are currently exploring whether adapting 4Pi could create a tool to help others without experience and capabilities in facilitation. They are also exploring whether the framework support healthcare quality improvement teams plan and manage how they involve and work with each other and anyone else, not solely patients/public. Similarly, they are keen to find out if 4Pi influences the longer term success of a project team’s PPI, leading to more meaningful involvement of patients or service users in research.
The West London Collaborative (WLC) is being set up as an independent Community Interest Company (CIC) initially working in partnership with West London Mental Health Trust. It plans to use authentic co-production to create and sustain meaningful working partnerships between the providers and commissioners of health & social care services and the communities they serve in the 8 boroughs of North West London. They list 4PI as one of the influences on the development of the business case, utilising each principle as a constant touchstone to ensure Principles Purpose Presence Process and Impact were at the heart of every decision. It was central to the Catalyst Projects (see below).
The WLC Vision:
“Local communities are no longer the passive recipients of health and social care. Things are not ‘done to’ – but with local people – who are actively invited to engage in creating their own health and social care outcomes. There is a new partnership of equals. It is common practice for service users, patients, carers to co-produce equally with professionals to effectively design, deliver and evaluate all health care services in North West London”.
The Catalyst Projects and 4Pi: The Catalyst projects will address issues jointly identified by the Trust and the WLC as having a major impact on patient and staff experience. They will set out to resolve these issues as a proactive and equal team of service users, carers and staff, all working in partnership. A Charter has been drawn up for the Catalyst projects based on the 4PI framework. All relevant aspects of the 4PI standards will be worked into a project plan that will be signed off by WLMHT and WLC. A patient leader will lead the programme in partnership with a named clinical leader; a budget, time line and outcomes will be agreed and partners and their assets identified.
The Catalyst projects will include a committed team of individuals who are taking part after an assets discussion and full training prior to the project commencement. Service users and carers will be paid in line with WLMHT service user payment policy or by time-bank hours.
For more information about 4Pi in the West London Collaborative, contact: Jane McGrath email@example.com
Healthwatch Northamptonshire is one of 148 local Healthwatch branches across England, each of which is based within a local authority. Healthwatch exists to ensure that people’s health and social care needs are heard, understood and met. Healthwatch Northamptonshire is working to help local people get the best out of their local health and social care services. Local Healthwatch is all about local voices being able to influence the delivery and design of local services.
Patient, Service User, Carer and Public Engagement: HWN believes in the principle of ‘Nothing about us without us’ and is working towards person-centred care to deliver the Healthier Northamptonshire transformation vision. For this to become a reality, all future decision-making about care and services must ensure meaningful and effective engagement with active demonstration of the principles. This necessitates a real change in the culture and understanding around public engagement.
Public Engagement and 4Pi: Healthwatch Northamptonshire has developed principles for Public and Patient Engagement based on 4PI, for which they are seeking endorsement from all local health and social care partners. The following is a summary of their principles for engagement:
- Engagement should be timely, meaningful and have a clear Purpose
- Engagement should have a particular focus on hearing from and Presence with people with the poorest health and wellbeing outcomes, and individuals and communities not previously involved.
- The Process of engagement should be accessible, visible and inclusive and aim to maximise public involvement. Practical support will need to be provided.
- One size of engagement does not fit all: multiple methods of engagement should be used to maximise engagement and seek a diverse range of views and experiences.
- Engagement and involvement should be at every level of decision-making.
- The Impact of engagement should be clear and regularly communicated: The principles of ‘You said, We did’ should be openly, clearly and transparently communicated.
For more information about 4Pi in Healthwatch Northamptonshire, contact: Rosie Newbigging firstname.lastname@example.org
Turning Point is a social enterprise, providing specialist and integrated services which focus on improving lives and communities across mental health, learning disability, substance misuse, primary care, the criminal justice system and employment. Turning Point’s core belief is that high quality services cannot be delivered without the continual involvement of the people who use their services as well as their families, carers and supporters where appropriate. Turning Point’s Mental Health Strategy for 2014 – 2017 includes a clear statement that: “service users, carers and relatives (are) to be systematically involved in all services, and in the wider governance of the Business Unit, and the design, implementation and review of the mental health strategy.”
Turning Point’s approach to involvement is constantly developing. Staff and service users have been involved in the development of the mental health strategy and eight-weekly regional meetings have been established, with key service user issues taken directly to senior staff for resolution or feedback. These groups also comment on new initiatives, for example: developing an Involvement poster, and reviewing Involvement training.
The 4PI standards were discussed in a meeting for intended sign-off but it became clear that the standards constitute a process rather than a one-off agreement. It was decided that some elements of involvement needed further discussion and clarification, within the context of a Recovery approach. They felt that the standards would benefit from being translated into something meaningful for people, perhaps using ‘We statements’ e.g. for Purpose: ‘We fully understand the purpose of Regional Involvement Meetings’. ‘We understand the limits of involvement’.
As a result of these discussions, Turning Point arranged two Recovery Days in London and Manchester and invited services users and staff who were interested in recovery or involvement. The days focused on gaining a shared understanding of what a recovery focused service should look like and how best to achieve this. They were delighted by the levels of enthusiasm and contributions which made the day a real success; all mental health services were well represented with over 30 delegates attending.
All contributions were captured and will feed into the overall recovery and involvement planning processes, which includes input into the Service User version of the Mental Health Strategy, development of a Recovery Charter and a Recovery checklist. They have learnt during this process that it is important to acknowledge challenges and work with stakeholders to share and resolve these challenges. Progress may be slower but it is progress in an agreed direction with involvement at the heart of every step. For further information about Turning Point’s approach to Involvement please contact: Julie Virgin (Area Development Manager/ Involvement Lead) email@example.com
National Voices: Wellbeing Our Way
National Voices’ Wellbeing Our Way programme is about enabling people to manage their health in ways which matter to them. The programme works through community and voluntary organisations and is supported by The Health Foundation.
Wellbeing Our Way aims to empower people to be active in:
- managing their health and working towards their personal goals
- making decisions about the care, support and treatment they receive, in relation to what’s important for their lives
- engaging with and shaping health and care support.
National Voices is the coalition of health and social care charities in England. We work for a strong patient and citizen voice and services built around people. We stand up for voluntary organisations and their vital work for people’s health and care. Wellbeing Our Way has adopted the 4PI standards for involvement. The ways we work with people with lived experience is summarised in this case study. The term ‘people with lived experience’ has been agreed by those involved and refers to anyone with experience of ongoing physical or mental health needs or caring responsibilities.
Principles and Purpose
“Opportunity to hear and listen to lived experience – and this was prioritised” “Excellent opportunity to meet and work with lots of wonderful people – and to be reminded of other people’s experiences/lives/views”
Wellbeing Our Way is using the principles of coproduction as a basis for how people with lived experience and those from organisations work together throughout the programme. In other words, we value the range of personal and professional experience people bring and are committed to bringing these diverse groups together throughout our work. Our Shared Expectations summarise this approach.
Through Wellbeing Our Way we aim to support charities and community groups to better enable people to develop the knowledge, skills, confidence and motivation to live well with their long term health needs. We believe that the involvement of people with lived experience at all levels of the programme is essential to ensure that the ‘more than medicine’ approaches that charities and community groups truly reflect the experiences and aspirations of people who are living with ongoing health needs. 4
Presence and Process
“I enjoyed working with a range of people on a shared task and felt welcome and comfortable”
People with lived experience are involved at all levels within Wellbeing Our Way, including:
- strategic decision-making, through membership of the steering group
- co-facilitating our series of POW WOWs (shared learning workshops)
- through the programme’s communities of practice, which bring together small, diverse groups of voluntary and community organisations to make real headway in developing some of the ‘more than medicine’ approaches we know can enable people to manage their health needs and live well, and
- sharing personal experience with a wider audience through WOW Now (the programme’s e-newsletter)
Our diversity monitoring helps ensure that people with a range of experience and backgrounds are involved in the programme. We work to involve ‘less heard’ groups through National Voices members who often work with diverse communities, and by inviting people with a range of backgrounds, identities and experiences. We have a reward and recognition policy which ensures that the contributions of people with lived experience are recognised and valued.
“Cleverly structured to achieve the outcomes”
We carefully consider the process of involving people – for instance, by using a range of facilitation techniques which offer different opportunities to contribute. We’ve found that people value time to get to know others in the room so we always include time for people to share aspects of their work, aspirations and challenges.
“Very interesting, purposeful and engaging. Excited to be involved and felt valued and respected.”
We are committed to ensuring that people’s time and expertise effects real change. We know this is already happening:
- By contributing to the programme’s model of impact, people with lived experience have provided valuable strategic-level direction to Wellbeing Our Way. The programme’s vision and purpose is grounded in the aspirations of people with lived experience, alongside those working within charities, community groups and wider stakeholders. Examples of how the contributions of people with lived experience shaped the model include:
- the model includes ‘mental and physical health needs’ (rather than ‘health needs’) in response to people with lived experience strongly advocating the benefits of explicitly valuing emotional wellbeing alongside physical health
- we use language which focuses on people’s strengths, not their needs – for instance, we focus on ‘enabling’, not supporting, and our vision is that people enjoy independence, optimism and control (rather than simply managing their conditions).
- Our case study Wellbeing Our Way – Influencing Change shows how the sharing of personal experience is helping one participant develop a young people’s peer support camp within his organisation. He reflects that hearing from young people themselves “has given me the tools and language to overcome the challenges faced by my organisation” – this reflects the uniquely persuasive way in which experience based sharing can impact service development.
- People with lived experience are making valuable contributions to the ways in which the programme uses its communications channels to engage a wider audience. By blogging and writing for WOW Now, people with lived experience are rooting the programme in their experiences and aspirations – a valuable basis on which to build.
As the 4PI model emphasises, involvement is a cyclical process and we have continued to develop Wellbeing Our Way’s approach to involvement throughout the programme. All quotes above are from people with lived experience, and demonstrate some of the ways in which involvement in the programme has been a positive experience.
We have also learnt some valuable lessons along the way…
- Take the time to get to know people’s skills and interests. By truly listening, asking great questions and offering genuine opportunities to participate, people will be able to create their own ways of contributing to a more diverse programme.
- Coproduction doesn’t necessarily mean consensus. Debate and disagreement usually show that people are passionate – effective coproduction means using these differing views to develop something more creative and inclusive.
- Agree a shared vision and goals. This ensures shared ownership from the outset and that the goals reflect the aspirations of a range of stakeholders. Be flexible about how you reach your goals – it’s been our experience that great ideas evolve and that a programme becomes stronger by adapting to the ideas of those driving it.
For further information about Wellbeing Our Way, please contact: Natalie Koussa, programme lead firstname.lastname@example.org