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Open Access Commentary

Mindfulness and the Wisdom of Advocates - Journeys in the Landscape of Health Care

Michael Hales , Robert Marx *

Sussex Mindfulness Centre, Sussex Partnership NHS Foundation Trust, East Brighton Community Mental Health Centre, Brighton General Hospital, Elm Grove, Brighton, BN1 3EW, UK

Correspondence: Robert Marx

Academic Editor: Ronald W. Pies

Special Issue: Mindfulness-Based Therapy for Mental Health

Received: January 10, 2022 | Accepted: April 14, 2022 | Published: April 19, 2022

OBM Integrative and Complementary Medicine 2022, Volume 7, Issue 2, doi:10.21926/obm.icm.2202019

Recommended citation: Hales M, Marx R. Mindfulness and the Wisdom of Advocates - Journeys in the Landscape of Health Care. OBM Integrative and Complementary Medicine 2022; 7(2): 019; doi:10.21926/obm.icm.2202019.

© 2022 by the authors. This is an open access article distributed under the conditions of the Creative Commons by Attribution License, which permits unrestricted use, distribution, and reproduction in any medium or format, provided the original work is correctly cited.

Abstract

Service-user volunteers in a National Health Service (NHS) Mental Health Trust in the UK have made an unusual contribution to mindfulness teaching, training, research and governance as ‘advocates’ of mindfulness-based therapy interventions. We explore the nature of what has been named internally as the ‘wisdom’ of the ‘advocate’ group in this NHS Trust, and its impact on mental health provision. A clinician (clinical psychologist) and an advocate (anthropologist) conduct an investigative conversational journey using a grounded theory framework in an institutional-personal landscape. They look for roots of the ‘wisdom’ in the mindfulness-based therapy, in the practices of the Trust, and in the tradition out of which the therapy has emerged. The investigators find themselves focusing on matters of institutionalisation and professionalism (as forms of exclusion), on journeying and arriving (as expectations - in life, and in embarking on therapy) and on the advocates’ ‘wisdom’ as a deepening recognition of the intrinsic inclusiveness of mindfulness as a practice. The paper stands at a distance from typical healthcare presumptions of professionalism and delivery of treatment. This particular (mindfulness-based) therapy is presented as an intrinsically inclusive life-practice within a community of deepening capability, rather than a medicalised treatment. The method of writing the paper parallels the fluidity of professional/patient role and mutual contribution and journeying that the mindfulness-based approach itself embodies, and this offers an alternative model of ‘service-user participation’.

Keywords

Mindfulness; inclusion; access; professionalism; plural perspective; grounded theory; service user; expert by experience; anthropological approach

1. Introduction

Former service users in a mental health Trust in England developed a role as a cohort of advocates for mindfulness-based interventions, provided by the Sussex Mindfulness Centre. The Centre emerged over a decade ago as a collection of clinicians, researchers, trainers and former service users. These latter, as ‘advocates’, contributed to the training of mindfulness practitioners, the clinical governance of mindfulness practice, the formation of a national report on mindfulness through being expert witnesses at an all party parliamentary group on mindfulness, reflections on diversity and demographics in the uptake of mindfulness-based therapies, and workshops at the Centre’s annual conference.

In 2019, one of the authors (RM), a consultant clinical psychologist in the Trust, suggested to the other an advocate (MH), that it seemed that the advocates collectively had evolved a ‘wisdom’ of some kind. The advocate acknowledged this, but also thought that whatever it was, it was linked with something distinctive in the practice of the Centre; and perhaps - beneath that - with distinctive characteristics of mindfulness as a therapy. In 2021 they finally sat down to have a conversation around this matter of ‘the wisdom of advocates’, intending in that way to generate this paper.

At the outset it was intended that the exploration, while open-minded, would engage with matters of wisdom, practice, journeying and inclusion/exclusion:

Wisdom as it was manifested in the advocates’ contributions to the Centre, and wisdom in the mindfulness tradition.

Practice of mindfulness; and also the evolved practices of institutional provision of mindfulness training by the Centre, and advocates’ evolving contribution in the Centre.

Journeying in institutional landscapes, in landscapes of life and wellbeing, and in landscapes of the mind and the self.

Exclusion, at least in the sense that mindfulness advocates are playing roles similar to those fostered by nominated ‘inclusion departments’ within the otherwise somewhat exclusionary professionalised divisions of labour in healthcare.

It was also understood that the investigators would bring to this exploration the distinctive kinds of discipline that both recognise as being cultivated in practice in the mindfulness tradition, which they share, while also respecting the rigour and practical helpfulness of evidence-based practices in their respective professional fields (psychologist, anthropologist).

2. Methods

The story presented here was developed through that conversation: in several legs, in video recorded meetings which were then transcribed. Each paragraph below contains a critical element of that conversation, though not necessarily spoken in exactly the sequence presented. Sections of speech have been aggregated under three headings, and under them, subheadings. They have been massaged a little for flow, context and length, but minimally.

The advocate’s background in anthropological field study led to a ‘grounded theory’ approach being adopted [1]. The majority of this paper fairly directly reports on the conversation to maintain freshness; grounded theorising aims to remain very close to the experiential data and to the context of their production. Sections of speech have subsequently been aggregated under three headings, and under them, subheadings. The headings, subheadings, and the concluding paragraphs generated around them, constitute an exercise in grounded theory.

However, the tradition that underlies mindfulness practice is itself a ’theory-of-practice’ tradition. It aims at cultivating a capacity for skilful habitation of direct experience and response: capacities of intentional ‘re-collection’ (sati, mindfulness = recollection) in the field of the heart-mind. This intention informs the personal practice of mindfulness, the secular practice of Mindfulness-based Cognitive Therapy (MBCT, the main therapeutic approach delivered by the Centre), the Centre’s dynamic of community; and yes, the wisdom of advocates. It is ‘theory’ (rigorous conceptualising) of a kind that is fundamentally grounding and close to practice; grounded in practice and in somatic phenomena; directly informing practice through mindful intention. It is also well founded (‘evidence based’) in generations of skilled practice. It is therefore hardly surprising, that ‘grounded theory’ in its commonplace sociological sense should be available for harvesting, out of a disciplined and attentive conversation around a practice of that kind, and mobilising those kinds of capability. Nevertheless, neither the ‘wisdom’ that practitioners might evolve, nor the instance of grounded theorising that we derive in this paper, can in any way be ‘read-off’ from such foundations. Both are unpredictable journeys of discovery, which we aim to speak of and to display in this paper.

The elements of conversation that were selected manifestly speak in numerous voices. In an earlier write-up of this research, the voices were tagged to identify different roles each speaker in that segment of conversation seemed to be ‘speaking from’. Some of these were interchangeable (eg Buddhist/Dhamma practitioner) and others not (eg NHS business unit manager, civil-society movement organiser) Some readers of that early draft found the tags confusing, and asked for named contributions: Person-A/Person-B. The multiple tags were dropped in a revised draft but we resisted tagging as Person-A/Person-B, because we are practitioners in a tradition that resists Selfing-and-Othering, singularity and clinging to fixedness, in favour of fluid and open-hearted, skilfully-focused responses to specific experiences, plurality of relationship and generous cultivation of the evolving capacities of (our)selves and others.

In that form, with untagged paragraphs as submitted to the present journal, we were aware that the draft presented certain difficulties to readers and could cause frustration: “Who said that? Has the speaker changed now?” But we believed the principle made it worth the risk of presenting some challenge to a reader. We also wanted to communicate the sense of fluidity, mutuality, exploration and live sense-making in an actual conversation across - and drawing upon - multiple roles/lives/planes of insight.

One of our three reviewers of the present paper likewise requested binary tagging of contributions. We have continued to resist this. A second reviewer was sympathetic to that choice while also recognising adverse consequences. They in fact suggested that we go further, addressing multiple selves of readers too! We love the principle but feel that this article is complex enough, without addressing perhaps a further clutch of identities in our reader population (perhaps complementary, perhaps tangential to our own, certainly more extensive). The third reviewer found the tacit rotation of ‘lives’ and orientations in the conversation a bit hard going, but was excited by the dynamism, expansiveness and realism. On balance then, we have chosen not to name names in what follows - except that, at the very end (Discussion), ‘authorial-we’ remerges, telling a ‘final’ story-in-three-acts about advocates’ wisdom; and two separate voices momentarily speak in Conclusion, at the close of this episode of collaboration and disciplined inquiry.

For more on methodology and approach, we switch now from the authorial-we into the voices of the conversation.

You and I are people who tend to want to stand ‘outside’ or alongside, and to ask: ‘What exactly is it that’s happening here? Let’s not leap in too readily with a narrative, and a conclusion or message or tag.’ You and I share a Buddhist dhamma vocabulary for this kind of concern. So yeah, our inclinations do have a kind of ethnographic spirit. However, the concerns and norms of academic or professionalised research disciplines are not necessarily yours and mine, we have other purposes and schools of discipline.

We’d expect our account in our article to be quite fluid and dispassionate as regards selves and self-views - emerging, giving-way - and quite disciplined as regards awareness of conditions, and responses under conditions (including conditions of interrogation). Also, aware of the wilfulness and habitual impulsiveness of narratives, compared with insight that’s available to the well-tuned, well-practised, in-the-body, settled, attentive, wisely-intentional heart-mind. So we’d maybe be willing for our account to appear to be in multiple personae, and for our story to be one of journeying, through landscapes of circumstance, in which Selves become capable of some degree of non-selfing, non-clinging recognition of a multiplicity of stories, any of which may be ‘true’ and forceful enough to be worth paying attention to, and none of which is ‘the story’.

Yes, but our readers do need to have some ‘take-home’, and something like a map of the journey we will have taken. Our challenge is to do this without falsifying our investigation, or contradicting our commitments as practitioners and advocates of mindfulness, in therapy and in life, in the moment, in context.

3. Results(Themes)

3.1 Journeying in the Professions’ Landscape

3.1.1 Sufficient Wisdom to Conduct a Life-journey?

We share some kind of awareness, of some kind of challenge in being human, within an institutional framework that’s dominated by a medical-professional aesthetic.

Given that I’ve been issued with this emoting body, and must serve my time in this somatic landscape, I might just as well get skilful with it. I found myself grasping the practice as a person acquiring a capability to live a life, well, within relationships of diverse kinds that make themselves very forcefully, inescapably present. Not least - desperate for help, in a life crisis - were the forceful, inescapable relationships of professionalised healthcare ‘delivery’.

The life situation of advocates: the advocates are people living lives: getting livelihoods, making commitments, working in and working out relationships, making it to the next staging-place, discovering some orienting relationship with themselves, and the landscapes they find themselves in. Advocating for mindfulness-based interventions is something that matters to them in their lives.

Most of that paragraph could be said of clinicians too. Part of what excites me is that we have a dialogue evading fixed categories of clinician and service user. It reflects a Buddhist perspective, in which identities that appear fixed are illusory and fluid. As the Buddhist text, the Heart Sutra [2] says: ‘Form is emptiness and emptiness is form’. Perhaps we can retain that fluidity in the text, so it isn’t easily presumed which one of us is speaking in which voice. Each responds to voices of ‘others’, including our plural selves, and has numerous life-roles.

3.1.2 Innovation, Professionalised ‘Delivery’ and Service-user Perspective

The usual domain of patient-advocacy and Patient and Public Involvement (PPI) [3] is a politics of ‘co-production’ with professionals; which is to say, that the professionals and their institution are the prior, constitutive ground. ‘We’ are on ‘your’ ground.

You came, as a service-user member of the clinical governance group, at a time when there was a movement in the Trust, and nationally, to involve service users much more. We wanted to do it, but we also were responding to a movement towards inclusion, and recognizing that we only help rather than ‘cure’, and were missing other perspectives by not having a service-user rep.

Seeing things from a de-professionalised point of view: ‘We want to improve, the quality of our services, and to tap the knowhow of our service users, in order that we can innovate, and evolve the quality of our service provision.’ That’s how the rhetoric goes. It takes the institution and its practices as core, and looks for triggers, sources of information and insight, resources, that can be exploited to enable it to evolve.

This whole business of service-user involvement and advocacy was familiar. It’s something I very much approved of, as an emergent politics of counter-professionalism in the NHS, and I was expecting there would be channels of that kind, that I could make a contribution through. It took a while though, to find the emergent dialogue space of the mindfulness clinical governance group, which pre-dated the Mindfulness Centre.

When you left the ‘committee’ role as a service-user member, you’d had enough of the sort-of arcane procedures of the NHS - which was quite interesting to me, to hear. It’s interesting how we get wrapped up and lost in all that paraphernalia.

When I sat in those governance-group meetings, part of me was the corporate anthropologist, undertaking fieldwork! And I had enough of that. This used to be part of my day job, as a research academic. Being retired, I felt it would be quite good if I could let go of opportunities for watching supersized organisations make a pig’s breakfast of things.

Charming! Thanks a lot!!

Apologies. Nothing personal. You folks were doing your level best to make the organisation make sense.

3.1.3 Standing a Little Bit Outside

In a number of ways, I think you and I are standing, institutionally, a little bit ‘outside’ - which is at the core of the practice tradition too: asking ‘What is it that’s going on here?’ Standing a little bit outside your experience and dispassionately noticing, so that you’re not just kind of swept along by the streaming momentum of your commentary or participation.

Sort of outside, but also fully in as well. In the practice, we’re working with Citta, the heart-mind. This gives it that immersed, engaged, responsive, sensual, alive, material quality, as distinct from the intellectual mind, where you slap categories on to things, and get logical and linguistic about stuff. Becoming skillful, and rigorous, well-informed in the moment, and skillfully enquiring about your own relationship with your own feeling-in-the-body.

3.1.4 Professionalism

Do we need to clarify what we mean by ‘professionalism’? For me, it’s a construct I want to embrace and also reject. ‘Reject’ because of how it creates divides - clinician/patient, well/ill, sane/mad, paid/unpaid - which primarily serves as a defence for professionals, against having to be vulnerable and human: which is exactly what we need them to be in the mindfulness world. ‘Embrace’ because I think it also stands for quality, competence, safety and accountability.

Reading notes from an earlier conversation we had, there’s something I liked: an emerging theme of power shift. It seems to me, what’s often done with ‘experts by experience’ is that people stay in their positions of power - whether it’s the power of the medical model, or the hierarchy of their institutions; and they reach out from that place and say: ‘We’re listening to you, talk to us’; and they listen, and they retain the same position of power that they always had, and they carry on. And it seems to me, that ‘advocates’ and ‘wisdom’ is pointing at something which differs from that - so that advocates, for example, are not exactly typical ‘experts by experience’. There’s something in the mindfulness model that is inherently equalising. It pares things down, to being two human beings - teacher or participant - both engaged in the practice, both screwing up, both with wisdom; and the wisdom being somehow intrinsic to the humanity, though not necessarily easily accessed.

The healthcare system forces us into many dualist categories: do-er/done-to, expert/recipient, professional/expert-by-experience. I think such dualities are helpfully unsettled, in the context of a practice of common humanity. And yet, our attempt at stepping out of positionality may not completely escape it.

On valuing professionalism: I wouldn’t myself put it under the heading of professionalism. But, there is rigour. In the NHS context, that commitment to rigour, supervision, the foundations of what we’re doing, what we’d call ‘clinical governance’, safeguards the work. One of the reasons you and I value the mindfulness tradition is because it’s saturated with discipline, albeit, not medicalised discipline.

The particular protocol you adopt as a mindfulness teacher is rather different than you would as a standard psychologist for example, or psychotherapist: boundaries are different. It’s much more: ‘We’re in this together’. You’re not a good mindfulness teacher if you’re coming from some position of: ‘I’ve got this sorted, and I’m going to tell you how to do it.’ You’re a much better teacher if you’re in touch with the challenges of your own practice, and failings in meeting these challenges.

3.1.5 Humans on Journeys

Yep. This resonates with things I see, also reviewing earlier conversations. The thing about being human, about being two humans. This takes us into ‘journey’, as a perspective in the story we’re trying to find. What you and I happen to be doing here is talking about our particular personal journeys. But we’re basically talking about the practice that we have adopted in common - which is conducted between humans on journeys?

I want to take ‘journey’ seriously, as a framing for this paper. We’re talking about humans, and humans’ journey through unrelenting life. It’s quite distinct from ‘the patient journey’, for example, which as a metaphor is humanising in intent, but not understood to be mutualizing, with a journey of a similar hazardous kind for the ‘expert’ doctor, nurse or therapist. It’s distinct too, from an episode of illness, and out ‘the other side’, ‘cured’. It’s unusual to be talking this way in the NHS. I think we are both on journeys, through life, and are speaking about that. Do you yourself have a sense that there’s a journey that you’re on? And if you do, does it have a destination, do you anticipate an outcome?

That’s an interesting question. In a mindfulness context it could almost be ironic. Because, in a practice sense, we are deliberately letting go of destinations, aren’t we? So I think I should ask you to be a bit more specific.

I’m not wanting to adopt a ‘position’ on that, I understand the ambivalence. But ‘journey’ is meaningful for me because, at this point of my life, because of the practice, I do have a sense that it’s possible to arrive somewhere. That’s radical. The majority of my life has been lived with a sense of being a vagrant; always having to travel, because there is no home, no place to settle. And I’m now quite sure that there is a home to arrive in, a possibility of making landfall: settling is possible.

Is that a sense of ‘Buddhist refuge’, kind of thing?

Actually, yes: ‘going for refuge’ to ‘Buddha mind, intrinsic in the ordinary human body; to sophisticated theory-of-mind contained in dhamma teaching tradition; and to a skilled sangha [4] or community of practitioner-peers. There’s a sense now - after 10 years of mindfulness practice - of having a capacity to navigate, to skilfully set directions/intentions. I don’t have to live out of my depth in oceans of emotion; I may put my feet on the bottom.

It’s really, really interesting actually, because I get what you’re saying, and I do agree with it. But there’s another side - maybe a different Buddhist tradition that’s kind of the opposite of that. The practice in this aspect is about becoming comfortable with there being no ground, no land, no point of conclusion, no place in which we’re in control, no place of having tied it all up and being right. The home is awareness really. And responsiveness. Not a fixed position.

Yes. It’s really comforting to feel there is a possibility of landfall - even, hosting a kind of guest house, actually, where friends also might stop over! But I don’t for a moment believe I’m ever going to stop needing to skillfully surf what’s persistently incoming; avoiding wipeout where - with skill - I can; and to quell turbulence.

However, the idea that some institution constituted by professionals is going to deliver ‘cure’ to me, or even facilitate ‘recovery’, feels daft. What helps, is wisdom about journeying and expectations of arriving. It helps in life. It helps in dealing with the institution where we can find professionalism excluding mutuality, and medicalism excluding the intrinsic capability for wellbeing and insight, in ‘patients’.

3.2 Emergence - Advocates, a Centre, a Community of Practice

3.2.1 Experts by Experience

There’s a role that I recognise: a life as a ‘professional patient’ in the NHS. I was in that world for a couple of years, before I encountered mindfulness practice. Just trying to find some provision that had any relevance to the difficulty - as I experienced it - of living life well here, in this life, in this experiencing body.

I found myself in the world of medicalised interest groups and PPI, and participated in the research domain for a period, as an ‘expert by experience’. It felt hog-tied, and compromised, by the institutional requirements of ‘evidence based’, medical-improvement culture. As an experienced qualitative researcher, it felt weird. I remember once, coming out of a research proposal writing meeting with clinicians and Randomised Control Trial (RCT) methodologists; and breathing a sigh of relief. It felt I’d escaped a ward of psychotics who all suffered the same terrible delusion!

I was seeking a mode of ‘expertise’ that would enable a different way of conducting experience. Rather than ‘evidence-based medicine’, I was needing a methodology for engaging and skillfully handling the evidence of my own moment-to-moment experience. Until Mindfulness-Based Cognitive Therapy (MBCT) swam into view, there was nothing in the culture that seemed remotely to promise this.

This is reminding me again of the uniqueness of this advocate group. When I compare it with that kind of centralised expert-by-experience practice, I don’t know what motivates people to participate in that. I’m sure there’s a lot of goodwill. I also wonder about other more personal agendas being played out, as indeed we are doing here too, though in a different way.

I have a hunch that one reason for staying in that world, as a professional patient whose life is wound up month-to-month dependent on the NHS, is a need to tell your story, and find somebody who’ll hear you. I think maybe, for whatever reasons, among the four original advocates, there was no need among us to do that. We’d actually been heard, if you like. We’d actually ‘met’ the therapy, and met our own capacity, which the therapy is designed to promote. So what we then needed to do towards the institution was simply make some contribution, in thankfulness and in recognition: a gift. We were tacitly saying: ‘I’m quite well, quite capable. Thank you’.

I think that relates to the core practice: mindfulness practice is not really interested in telling stories.

I’m sure it’s not widely understood that it’s not ‘talk therapy’. It’s walking a walk rather than talking some talk: a somatic practice.

3.2.2 Advocates Meet

A pivotal phase in the emergence of a cohort of advocates was the All-Party Parliamentary Group (APPG) (https://www.themindfulnessinitiative.org/mindfulness-all-party-parliamentary-group) in 2014. At that time - after five years’ advocating for MBCT, I hadn’t met anyone in anything like the same kind of relationship with the Trust. It wasn’t until four of us rocked up at a committee room in the House of Commons one afternoon, to give service-user ‘testimony’ before the APPG, that I actually met others who, from then onwards, functioned as an informal grouping. After this initiating event we were on-call, at your invitation, for ad-hoc ‘public speaking’ gigs for the Sussex Mindfulness Centre; generally, on trainings for mindfulness teachers.

If that national, professional-community, ‘big-picture’ stuff hadn’t been on the move (with Trust researchers and developers participating), the advocates might never have known about each other.

3.2.3 The Sussex Mindfulness Centre

If we’re chasing the question of, ‘what’s the uniqueness of the advocates?’ I’ve always felt part of it is the uniqueness of the Centre as a community of practice. There was a combination in the Trust of research, clinical practice, service development and clinical governance; an alliance of clinicians, researchers and ‘NHS outsiders’ with committed, long-term Buddhist practices. And the Centre began to have means of growing, including revenue from fee-paying trainings and work with other organisations.

I think this facilitated the wide external networking of practice in the Trust. As an advocate-participant I’m sure the APPG event influenced my own perception that a community was forming, what you and I understand in Buddhist terms as sangha. Sangha was the basis of the Centre, and context too for your own lonely work taking on a role as a business manager. The commitment of that tradition, to cultivation of capability in all its members, without limit, is an inclusive aesthetic that then gave an institutional space to advocates. In such a space they too might subsequently evolve a sense of ‘wisdom’ as they also developed a shared practice.

3.3 Wisdom of Advocates - Delivery, Access

3.3.1 A Supply-side View, and the Wisdom of Advocates

The advocates think the practice [mindfulness practice] is terrific! It doesn’t need innovation in treatment, in the way that the institution invites experts-by-experience to contribute to. Rather, the issue is, ‘how to get more people to participate?’ And maybe, then, evolve more specific, demographically-focused, appropriate provision that enables both perceptions of, and actual, accessibility in people who are in trouble but routinely discount the possibility of mindfulness therapy as a place of help?

Somehow, I feel this shifted perception is at the heart of what you were referring to when you spoke a couple of years back, of an emerging wisdom in the advocates. It’s emerged rather recently, and I think mainly through the advocates’ participation as workshop-organisers in the Centre’s annual conferences.

There’s a classic kind-of supply-side dominance thing: an institution that’s built for the suppliers to supply something. It’s not actually driven by the needs of the people who turn to it for support.

As a service provider you’re a bit wary about drumming up business that you then can’t respond to, creating expectations and disappointing people. However, while everything is kept ‘balanced’ in terms of provision and take-up, there’s not pressure to come up with changed institutional arrangements.

There was this emergent sense of enquiry: who are we, the advocates? We don’t really represent the spectrum of those who find themselves with no choice but to enter the mental health arena. What can we do, to spread the provision (and broaden the advocacy base) to other kinds of people, who can benefit as we have? It brought us to this issue of the accessing of therapy provision, and why do some people participate and why do some people resist? I think maybe this is our emergent ‘wisdom’.

3.3.2 Three Hunches

One hunch that we advocates now are pursuing is, it’s to do with class: mindfulness being seen as one of these ‘get a life’, personal-cultivation things that poncy middle-class people do, and working-class people don’t have time or money for - as if they didn’t have better things to do anyway.

But there was also a thing that two or three of us recognised in ourselves and in others we are close to, of people actually wanting to cling to the suffering, unable to tolerate losing the sense of themselves that would be involved, in actually ceasing to suffer. So they/we stay unhappy - ‘choose’ to stay unhappy - and to rage, victim-wise, at being trapped in a sump of unhappiness, rather than participate in a practice that might furnish them/us with comfort and ease, and make us, not ’better’, but better-able, to live well and comfortably in the ongoing presence of trouble.

One of the younger advocates set out to enquire why people under, say, 25 years old, might not be open to mindfulness therapy and self-referral into the service. Self-exclusion seemed to be part of it. Initial exploring suggested, first, that people might mistakenly think of a mindfulness group as ‘group therapy’ and ‘talk therapy’, in which everyone must speak; and feel reluctance to dump out their stories with strangers. And second, that they anticipated - not unrealistically - being in a group with older people, not sharing their perspectives and issues. Both of these, then, are bases of self-exclusion. If either or both of these were the case, the response of the service provider would need to be, on one hand, an opening of people’s expectations, through informed perception of mindfulness practice, and - on the other - specifically focused provision and recruitment.

What all these hunches have in common seems to be that, rather than improvement of some kind in a therapy, they’re to do with the capacity for accessing or self-referring; and with being open to accessing provision, based on expectations of provision.

3.3.3 The 2020 Conference, off the Cushion

I’m interested in fostering a perception that mindfulness should be more than stress reduction, or preventing relapse in chronic depression. From a Buddhist perspective it’s much more than that. The 2020 conference, prevented by the pandemic, was to follow the theme: ‘From the cushion to the street’.

For two or three years, as we’ve talked more to one another - generally connected in some way with organising workshops for the conference - some of the advocates have been chasing a notion that, for many people, we don’t actually want to change! We want a doctor to do something to us, or we want to be able to hang in there, in an intolerable situation. And we don’t actually want any transformation. Whereas, perhaps it’s true of these people who’ve become advocates, that we did feel that we needed some actual change. And what the therapy presented was an invitation to a practice, with an inbuilt dynamic. A participant who is open to transformation can adopt it.

The wisdom idea does seem to be pivotal. From a Tibetan Buddhist perspective, humans have an innate capacity for wisdom - ‘Buddha nature’ - covered over by conceptual and emotional obscurations, including attachment to habits, and not knowing how to escape samsara [Samsara: a self-fuelling cycle of ignorance and entrapment in fields of trouble and dissatisfaction]. The wisdom is entirely unrelated to role (clinician/service user) or even to experience. This therefore is fundamentally equalising.

3.3.4 Sangha

Advocates had made contributions year on year in the Centre’s mindfulness teacher-training course. On one such occasion a couple of years back, in a friendly-feeling roomful at the end of a course, in what had become a familiar situation, I found myself saying to you: ‘Look around, I feel a sangha is forming here’. This is not accidental, it’s coming out of some kind of thread of culture that’s constitutive of the Centre and of the therapeutic practice itself.

There was a point where we advocates began to talk to each other about what we collectively were engaged in, and to generate some explicit perceptions of what needed to be done, to accomplish what our advocacy was about or for. Focused around workshops in the annual conference, we began to reflect on who was in the advocate cohort, and who was not.

The community has always been a very important part of what we’ve wanted to cultivate at SMC. At the 2019 conference, I felt, and people commented on, a palpable sense of community.

I think the idea of ‘the wisdom of advocates’ is a nice starting point. It does reference some kind of actual emergent phenomenon. But I immediately began deconstructing that, seeing something more complex, systemic and institutional: the practice of the Centre. And underlying that, the Centre, and the advocates advocating for it– what are we advocating for? In fact, underlying all that, a tradition of practice running over many generations; and arising in and through that, sangha: the self-recognising community of ‘experts by participation and commitment’, who serve the practice?

4. Discussion

4.1 ‘The Story’ and the Take-home

This journey has been very broad and truly investigative, but we seem to feel it makes some grounded-theory sense to gather it under three headings:

Journeying in the professions’ landscape.

Emergence - Advocates, a Centre, a community of practice.

Wisdom of advocates - Delivery, access.

So we’ll say a paragraph about each.

The theme of ‘journeying’, that we wanted to take up in our conversation, plainly refers to the institutional landscape; and we have plenty to say about what we perceive to be the exclusionary nature of the healthcare institutions that we have adventured in. But also, we uncovered a significant thread around ‘journeying and arriving’, as expectations: in life, in ‘recovery’ from emotional trouble, and in embarking on therapy. Part of the wisdom of advocates seems to relate to the willingness or otherwise, of people in trouble, to really journey in the landscape of their own experience, which can, advocates have discovered, facilitate unanticipated comfort, capability and (in a certain sense) ‘arriving’.

We set out looking for a story of how a self-aware cohort of advocates emerged, as something that seemed unusual in the sphere of ‘experts by experience’ and PPI. And how ‘wisdom’ of some unanticipated kind emerged in this group. What we seem to have found is that this story tells itself as one, not about a particular bunch of people, but as one about a tradition - a practice not native to the healthcare domain - and a kind of community of practice that the tradition calls sangha. For advocate/service-users, the tradition is present not only in the evolving public and institutional conduct of the Centre but also in the therapy itself: manifestly ‘in the room’. We observe in all this not only a social inclusion but also an expansiveness, and we recognise this as a movement-of-the-mind-heart which is at the heart of the practice, and of the therapeutic contribution that it may make to a practitioner’s capability for responding to emotional trouble in a life: their own life, another’s life.

In a context of professionalised, institutionalised and medicalised delivery, the story of advocates’ wisdom seems to be that they have found themselves engaging with accessing rather than delivering. But rather than being simply a story of institutional exclusion, it also seems to be a story of self-exclusion and entrapment. As experienced members of big, bureaucratised organisations of professionals, both of us expected to be telling stories about the institutions, and about the particular politics of medicalism and ‘evidence-based medicine’ in relation to actual help in actual lives of actual persons. What we hadn’t expected was that self-exclusion would emerge as part of the wisdom of a group of people - the advocates - who, more than anything, were wanting more people to access and self-refer for ‘treatment’. Now that we see this, we’re unsurprised, because we recognise that the core practice in a mindfulness tradition is about ways in which ‘we’ - in clinging to some ‘we’ or ‘I’ - exclude ourselves from expansive, inclusive living: in the world, and in our own troublesome interior landscapes. The institutions that the therapy engages with are thus only secondarily the social institutions of professionalised healthcare (including inclusion/exclusion). The primary engagement of the practice tradition is with culturally-sustained ‘emotional institutions’ of Self and self-sustained trouble. The story of exclusion from mindfulness-based therapies is a more complex one than we thought we might tell. And the wisdom of advocates is what makes us engage with that complexity.

5. Conclusion

Having this conversation, between the two of us in our multiple roles, creatively adventurous, is not that common. I’m not sure some of my colleagues would even contemplate it. So, that’s worth celebrating? I have a sense that writing in clinical psychology often takes truly interesting subjects and sucks the life out of them with dry empiricism!

Feedback on previous drafts has been interesting. Other advocates and mindfulness teachers have found that it engages and also represents them. Others, whom we might see as representing the fixity of some of the categories we are unpicking, have felt we haven’t done justice to the work they do. We don’t intend to disrespect their work, and we also welcome the tension: there is vitality in it. We have been seeking a vital, non-institutional­ised authenticity. The less positive reactions also confirm our perception of being on the ‘outside’: even to those whose job it is to represent outsiders, the disempowered.

As we close this episode of journeying, for me there’s something about a more inclusive or fluid sense of roles, and a sense of genuinely learning from one another: mutual contribution and movement. Rather than a rhetorical political correctness and, in fact, institutional stasis. My reaction to a lot of service-user ‘participation’ stuff is that my heart sinks. It feels like political hoop-jumping that isn’t actually changing anything structurally.

For me, the travelling feels uppermost. We both seem open to travelling, whatever the next bit of landscape. Partly it’s temperamental. But fundamentally, it’s the practice. The practice has turned out to be in fact the ‘method’ we’ve mobilised, to research this putative ‘wisdom’ arising ...in the practice! Not a random walk then, but a well-formed, well informed, and reflexive travelogue!

This paper is constituted by a dialogue between the two authors. The journal asked us to make clear that no human, animal or plant subjects were involved in the study. No ethical approval was required. However, the work was conducted in accordance with the principles of the codes of conduct of our professional bodies.

Acknowledgments

The authors wish to thank the other advocates, mindfulness teachers, academics and members of the Trust’s People Participation department who all contributed in different ways to the formation of these ideas and offered feedback on previous drafts of this paper: Julia Racster-Szostak, Helga Dittmar, Helen Leigh-Phippard, Lynn Ley, Liz Holland, Sam Robertson and Adam Reed.

Author Contributions

The paper emerged from a shared, equally steered dialogue between the two authors. MH conceived the idea of the paper, transcribed the dialogues and drafted the majority of the paper. RM contributed to each successive draft and prepared the current paper in its preparation for publication in this journal.

Competing Interests

The authors have declared that no competing interests exist.

References

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  2. Pine R. The Heart sutra. Berkely: Counterpoint; 2004.
  3. Grotz J, Ledgard M, Poland F. Patient and public involvement in health and social care research: An introduction to theory and practice. Springer Nature: New York; 2020. [CrossRef]
  4. Gethin R. The foundations of Buddhism. OUP Oxford: Oxford; 1998.
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