Guest Blog: One Step Beyond – from Alexis Devereux

MAI Guest blog - Alexis Devereux

The Art of Collaboration when Capacity is Compromised
“When I am an old woman I shall wear purple”
Warning by Jenny Joseph
© Jenny Joseph, Selected Poems, Bloodaxe 1992

Written ostensibly as an ode to nonconformity, Jenny Joseph’s irreverent take on salvation in old age immediately struck a chord with my rebellious thirty year old self. Fast forward twenty eight years (oh how time flies) and that steadfast determination to wheelspin into my twilight years with a twinkle in the eyes and a two-fingered gesture at the world remains as vital as ever. Let’s hope it stays that way!

But, despite the fighting talk, will my florid get-up and feistiness be forsaken for bubble wrap couture, or worse still, a cloak of invisibility? By this, I mean the nagging doubt that one may well end up joining the ranks of those in later life who are viewed through a lens of decrepitude and ‘defectology’ and where clinical judgments or resource-led decision-making predominate.

Given the primarily negative views of aging that pervade Western culture to this day, it is not really surprising that the vitality of an individual can become obscured as they grow older. In particular, I am thinking of the cloudiness that comes to shroud those who show signs of impaired thinking. To be seen as an autonomous being capable of profound purpose in life is a choice often denied to those already grappling with the traumatic impact of cognitive decline. If this situation wasn’t bad enough, imagine how diffuse those efforts must feel if it was determined that you were no longer able to act in your own best interests.

Even with the move away from traditional, paternalistic models of care towards shared decision making and self-management support, this idealised relationship falls at the first hurdle if interpretation and application of mental capacity law mean a person’s views are denied full weight. Poor levels of knowledge and understanding not only result in a failure to give sufficient priority to the ‘wishes, thoughts and feelings’ of the person concerned but also serves to reinforce the idea that older people are either weak, and incompetent, or require rescuing.

In terms of achieving a more emancipatory form of engagement, I would argue that the social prescribing model offers one of the most effective ways to develop more equal partnerships between people. And, at the heart of this implicit desire to link people to meaningful sources of support, sits a groundbreaking question – “what matters to you?” This deceptively simple enquiry has the capacity to enable conversations that are both collaborative, and contribute positively to individual health and wellbeing outcomes. That said, there is still the same obligation to gain informed consent from participants of the service as with any other data subject. Without it, this type of barrier can lead to a place of patchy implementation at best, and non-intervention at worst. That being the case, how do you create a realistic route map to a place where that person would rather be?

In view of the intransigence of this problem, I believe a more radical proposition is required – a bold step to transcend the inherent limitations of informed consent for those experiencing emotional overwhelm or informational overload. That said, the foundations of this idea are already conveniently embedded in the UK Government’s COVID-19 mental health and wellbeing recovery action plan.

With a clear call to action for the ‘whole of society, for local communities, families and for individuals’ to step up for the greater good, this policy paper outlines solutions for supporting the nation’s well-being that are highly reliant on self-determination. As preventative social well-being measures go, there is much to recommend the personally accountable approach.

Who can readily forget the groundswell of care, compassion, and cooperation that marked our collective efforts to respond in an agile and immediate fashion to adversity wrought by the global pandemic? A rather bureaucracy busting, form of community led action at that! That is not to say that a strong emphasis on ‘personal responsibility’ should result in an abdication of the state’s moral imperative to support access to timely, affordable and effective health and social care. Yet, given the likelihood that someone experiencing impaired cognitive performance will be compromised in their ability to provide informed consent, I do feel that solidarity and community based action is key to meeting the fundamental human needs of such individuals.

Even so, cultivating the structural and conceptual conditions required to embed this form of social cohesion requires a distinctive form of nurturing. It requires developing an enhanced understanding of the wider networks that enable a given community to flourish. It also requires commitment, perseverance, and creativity. This is where an ability to draw on cross disciplinary knowledge and experience comes into its own. And speaking as a woman has traversed an unconventional path of personal transformation, and only in later life gained a sense of what might truly be possible, now feels like the right time to go big or go home.

By big, I am talking about taking the seed of an idea planted years ago in the fertile soil of my imagination and using it to contribute to a blueprint for individual and collective growth.

As someone still working on improving their self confidence, that statement of intent feels pretty big indeed. Be that as it may, I didn’t get here alone. Many people have stuck by me over the years, building trust, showing faith in my abilities when it was in short supply, and creating a sense of connectedness when less than optimal experiences had left considerable gaps in that vital playing field. In short, the same distinguishing characteristics that promote human flourishing as those within the social prescribing framework. Characteristics that could similarly shine a light on the often concealed character, skills and abilities of those who ordinarily struggle to connect and communicate.

Where my proposition diverges from the social prescribing pathway is through the integration of a meditation assisted health coaching approach that unites the well-being benefits of mindfulness meditation with compassionate actions and the strengths of conscious citizenship. To be fair, this premise is not entirely new. Spiritual gurus and radical thought leaders have been promoting the benefits of meditation practice for creating equitable communities for hundreds of years, millennia if you count the teachings of Siddhārtha Gautama, aka the Buddha. Nevertheless, despite the huge surge in popularity of mindfulness meditation, significant social change is yet to materialise. Clearly, a further shift in mindset is required to engender a broader range of prosocial behaviours.

One way to achieve this transformation is through the development of self awareness that is mutually dependent on a concern for the welfare and wellbeing of others. Based on the 5 steps to mental wellbeing – NHS (www.nhs.uk) model my specially designed online course will not only help participants achieve better emotional regulation, greater clarity, and a more positive outlook but also identify more effective ways of communicating and connecting with others. Sustaining this type of citizen led action through informal, yet robust networks of befriending and practical support will then play a key part in generating the necessary resolve and goodwill for community flourishing, as well as inspire neighbourly advocacy for those needing support to have their views and wishes understood.

Find out more about this innovative and collaborative approach to well-being by clicking here.
Once there you’ll see I have chosen a rather distinctive brand palette – the colour purple of course! Rebelliousness aside, I really hope that you’ll view it as a signifier of a compassionate heart and creator of community inspired relationships.

Capable Citizens Collective (instagram) >

Download the original written version + footnotes >