Many Thanks to Helen Crimlisk for her contribution:
Reflections on attending the 5th ESRC-Co Leeds
I am familiar with the power of storytelling. It ought to be familiar to all doctors – we use the word “history” to indicate the nature of the dialogue between doctors and “patients” as they try to jointly make sense of the issues being discussed. The experience at its heart should be an act of co-production. It should lead to a collaborative effort to arrive at a place where joint understanding is arrived at and some thoughts on what (if anything) could or should be done next by either or both parties to alleviate or attenuate suffering (the origin of the word “patient”).
But how much do I really listen? Today, I was moved by hearing the stories of hope and challenge from Tricia Thorpe and Vanessa Findlay (delivered at their pace, without the opportunity to interrupt, question, comment or plan) who alluded to trauma, hopelessness and frankly poor quality of past services, but focussed on their own personal development and roles in helping others. Their testimonies had power, wit and value. The sense of having been heard and understood is a process which should have inherent worth, although all too often, the process is hijacked by other processes – administrative, artificial constraints and the need to make plans for the future.
I work as a psychiatrist. I am bound by professional, legal and regulatory processes which, despite benevolent intentions around care, safety, quality and governance can be stifling and frustrating (I’m not looking for sympathy, just relating the day to day experience of many of us). The focus on these issues is one of the reasons that I believe we have a health and social care system which is creaking and is why I am keen to look at ways of reconnecting with the reason most professionals are in the job – a desire to be compassionate – and nurture that quality in others, especially students and trainees. Hearing patient stories can help us understand the meaning of “quality” from the perspective of patient/service user as well as that understood and defined by professionals. Working together with patients or service users as an integral part of the teams is the most effective way of undertaking quality improvement or service redesign.
Co-production is the obvious answer isn’t it? And so I along with many other colleagues busy ourselves ensuring patient participation, peer worker involvement, service user engagement and experience based co-design methodologies, making co-production work.
“How much are you prepared to change your view?” was the challenge today.
“Because if you’re not, then there’s really little point in continuing”.
This is something we don’t talk enough about and I need continually reminding of. There is still a risk that we still behave as if co-production can be “added on” – an addendum to satisfy patient groups, grant giving bodies, commissioners, Boards. But – in co-production should expect an element of surprise, risk and paradigmic shifts of power. If it is too easy, we should question whether we are actually doing co-production or simply playing at it. There is a big risk of recreating a system based on familiar patterns and comfortable traditions. Today’s reminder about the inherently radical nature of true co-production in their exploration of the value of a truth and reconciliation process by Mick McKeown and Helen Spandler certainly raised my heckles. Also helpful and horrifying was Shirin Teifouri’s eloquent challenge that co-production as currently undertaken is infantilising and culturally exclusive. I intend to continue working within the system. I will be constrained. This does not mean that my actions are worthless or insignificant, but they will not be revolutionary. This means my attempts at co-production will be almost inevitably flawed.
Something which does not help is the artificial dichotomy between professionals and service users. Not only does it maintain power imbalances, but also fails to recognise the potential value of lived experience in staff members, who should be able to use their experience to enhance their professional roles. The recognition of the stories all of us have within it are one way of finding our common experiences and enabling us to bridge the gap and come closer to “the other”. We have started on this journey but have a long way to go. Engaging with and valuing this is work which will progress the story further, iteratively and painstakingly slowly, but nevertheless in the direction of the Utopia alluded to by Brendan Stone in the final inspiring talk of the day: an unachievable goal, but one still worth aspiring to.
A final reflection was how welcomed I felt at the meeting. I don’t recall previously having attended a meeting where several people checked in with me that I was feeling ok and not too “attacked”. Thank you.
Seminar 5 will be held at the University of York, Research Centre for Social Sciences Building, 6 Innovation Close, YO10 5ZF
Follow us on the day via Twitter @ESRCcopro #ESRCseminar5
(View a PDF of the programme here.)
9.30 Registration (with tea and coffee available)
10.00 Opening with Martin Webber and Pamela Fisher
10.15 Tricia Thorpe and Vanessa Findlay: Tricia Thorpe, Anti-stigma coordinator, Real Voices working for Leeds and York Partnership Foundation Trust (LYPFT) and Vanessa Findlay, Anti-stigma volunteer.
Are you sitting comfortably? We will explore the numerous ways stories are shared within LYPFT, a secondary provider of mental health (and learning disability services) across Leeds and York. For the context of this discussion we will focus specifically on stories drawn from experiences within out mental health services. We will look at stories and experiences which are shared in a number of ways and for varying purposes across the organisation. Highlighting both positive contributions and where there is room for improvement, reimagined without barriers, to evidence true benefits to both systematic change/service improvement and recoveryfocused elements for the story-tellers themselves.
11.15 Discussion of arising themes (with tea and coffee available)
12.00 Mick McKeown and Helen Spandler: Mick McKeown, Reader in Democratic Mental Health and Helen Spandler, Reader in Mental Health, University of Central Lancashire (UcLan)
The strength and weaknesses of a reconciliation process for mental health care A process of ‘truth and reconciliation’ for psychiatry is discussed as a (perhaps imperfect) means for laying solid foundations for psycho-political alliances.
1.45 Keynote: Brendan Stone (Professor of Medical Humanities University of Sheffield)
The impossibility of co-production If we care about the practice we have come to name “coproduction” then we are surely called to think deeply about the challenges to its realisation. Is coproduction really possible? And if so, where and how does it happen? In this talk I’ll speak about the radical nature lying behind this now co-opted term, and point to ideas and examples which may act as resources for understanding and acting.
3.00 Tea and coffee and identification of the main points arising from presentations and discussions
3.30 Adam Montgomery is a Dual Diagnosis Peer Support Development & Group Worker employed by Leeds Mind. However, it will be in his capacity as a spoken work artist and poet that Adam will close the seminar.
3.45 Additional networking opportunity
View the PDF here.
The fourth seminar of the ESRC series was held at the University of York on 28 October 2016. The seminar participants came together from diverse groups, including service users, professionals and academics, to share their experience and knowledge.
The opening session of the seminar was led by Pamela Fisher (Leeds Beckett University) and Martin Webber (University of York). Reflecting previous seminars, the opening session highlighted the important point that co-production is about ‘authentic’ power-sharing in decision-making, which is closely linked with the issues of citizenship and social justice.
In a session entitled, ‘Commissioning of self-management support: an exploration of commissioner aspirations and processes in the context of moving towards co-produced and socially connected interventions’, Anne Rogers (University of Southampton) reflected on the importance of ‘connectivity’ and a ‘capability approach’ when considering self-management and co-production from social and sociological perspectives. In the field of mental health, a core consideration is risk. However, there is a need to consider a capability approach, which focuses on what an individual values, and can achieve. This approach recognises the social context and engagement with valued people, places and activities – aspects which are often hidden from view, but which are likely to be important in the management of long-term conditions. As an example, drawing on the findings from a recent study, Anne made the point that pets are now recognised and valued for the companionship and engagement they offer. Pets are usually not considered, or ‘valued’, in the care assessment process. However, the findings highlight the role of pets should be considered more central, as part of the valued circle of support in management activities of the personal networks of people with long-standing mental health problems.
Anne also suggested the importance of a network perspective, which offers an opportunity for looking at the broad range of social capital, shifting the lens beyond formal health systems. From this perspective, commissioning needs to address the ‘power of social networks’, redressing the balance from an exclusively individual focus on self-management. Networks are important in commissioning. Anne then introduced an online network mapping tool, ‘GENIE’. ‘GENIE’ helps to visualise social networks in diagrams comprising concentric circles, and to enhance people’s connectivity with local resources.
In the following session ‘Co-production in commissioning for mental health: Are we there yet?’, Karen Newbigging (University of Birmingham) presented an overview of commissioning in four stages: assessing needs, planning, securing (provision of services through contracting), and monitoring (though acknowledging this ‘ideal’ cycle may in reality be a lot messier). Commissioning is a ‘process’ involving all of these stages; it is not only about assessing needs and assets, but the ‘engagement’ of various people throughout the process. Co-production in commissioning involves shifting the discourse towards outcome-based commissioning, rather than focusing on outputs. Commissioning (co-commissioning) in mental health involves Clinical Commissioning Groups comprising GPs and managers, local authorities, individuals with health and social care needs (personal budgets/ direct payments), and NHS England. Commissioning is a form of service transformation:
‘Good commissioning starts from an understanding that people using services and their carers and communities are experts in their own lives and are therefore essential partners in the design and development of services. Good commissioning creates meaningful opportunities for leadership and engagement of people, including carers and the wider community, in decisions that impact on the use of resources and shape of services locally’ (University of Birmingham 2014: Commissioning for Better Outcomes).
Karen explained that for commissioning to be co-productive, it needs to have the aims of:
* equal partnership throughout the commissioning cycle
* a form of deliberative democracy
* being values-driven – reciprocity, power-sharing
* shifting to an assets-based approach
* shifting to a social model – with importance given to the social context, individual values and preferences
* transparency and accountability for decisions.
To the question, ‘Co-production in commissioning: where are local commissioners on the co-production journey?’, the response of the seminar audience was that commissioners were generally not on the journey. However, there are examples of positive practice regarding co-production in commissioning, such as the Lambeth Collaborative and the UK’s first Mental Health Parliament in Sandwell.
There are different ways of viewing co-production’s involvement in commissioning. Commissioners see commissioning as a rational process, and emphasise the right structure and process. Providers see it as a ‘fine-tuning’ process, to help get their services right, or as a way of exerting leverage on commissioners. Service users and the public see the process as being a wide spectrum of activities, ranging from direct involvement in care, to more strategic purposes. For successful co-production in commissioning, the understanding gap might be a barrier.
The facilitators of, and barriers to, co-production in commissioning were identified as: external factors (such as the social, economic and environmental impact of commissioners), organisational cultures, capacity and resources, values, and commitment to co-production – and, importantly, the power issues within those factors. Finally, Karen suggested that for co-productive commissioning, commissioners need to embrace the following approaches:
* doing it together – deliberate purposes and methods
* attending to organisational cultures and building capacity for co-production
* investing in and supporting user groups/ patient forums/ voluntary sector, to build capacity
* tolerance of ambiguity and understanding/use of a plurality of methods and approaches to engage all sections of the population
* deliberating the limits – are there any? Valuing activism
* building co-production into contracts
* sharing and learning from successes, and challenges.
The following session, ‘From the street to the strategy: co-producing system change in the real world’, was led by Joseph Alderdice (West Yorkshire Finding Independence (WY-FI)) and Danielle Barnes (WY-FI). In part 1 of the session, Joe talked about his experience of bringing co-production to the strategic commissioning of mental health services in Leeds. He introduced Leeds Mental Health Strategic Partnership, which involves the NHS, local authorities, and voluntary sector organisations. It also involves 150 other individuals, who are networkers, activists, artists, poets, peer supporters and researchers. This reflects crucially important elements of co-production – considering the lived experience of people and human connections beyond the boardroom. Based on shared values, the Partnership defines priorities and competencies, and designs and delivers training.
‘What’s in it for people who engage in the commissioning process?’ Joe reflected that it involves the sense and experience of reciprocity – not only contributing, but actually getting something from it themselves as well. It also involves peer support and validation of the perspectives of those involved. Joe described co-production system change in the real world, drawing the analogy of an old ship – an individual can be energised through the support process, just as an old ship can be blown onward by the wind.
In part 2 of the session, using a conversation style of presentation with Joe, Danielle talked about WY-FI and its co-production story. WY-FI aims to improve the lives and well-being of people with the most entrenched multiple needs, who are currently systematically disengaged or disconnected from services, in the areas of homelessness, addiction, problematic substance misuse, re-offending behaviour and mental ill-health. Danielle views her working practice as being less like that of a traditional key worker interacting with a service user, and more like friendship. She emphasised that the most important element in working in co-production is building relationship and engaging with people. It is about finding out about the problem together, and designing the solutions together, through understanding the culture and language of real people. She feels that it presents a difficulty in co-production when people ‘speak different languages’. Joe and Danielle’s session highlighted that trust and reciprocity are key elements in co-production, and this stimulated much discussion in the wider audience.
The discussions extended to the meanings of ‘professional’, and ‘professionalism’, and how these impact people’s perceptions. This reflected the importance of language – as the social world is in part linguistically built, and in that sense we are ‘prisoners’ of language. From their experience of working with people in practice, the audience shared their view that the conventional model of ‘professionalism’ and being ‘professional’ can hinder the building of trust with service users. To achieve the practice of co-production, we need to change our perception of ‘professional’ and ‘professionalism’. The lively discussions were followed by co-produced poetry. Adam Montgomery (Leeds Mind), a word artist and poet, closed the seminar by reading his poem, created by connecting seminar participants’ words, and capturing the day’s discussions and presentations on co-production.
(Reported by Yoshimi Wada)
Following their presentation at Seminar 4: Co-Production in Mental Health & Commissioning, Joseph Alderdice & Danielle Barnes (WY-FI) agreed to a ‘Talking Head’ style discussion.