According to Paul J Zak, a neuro economist at Claremont Graduate University, a story has the power to affect our attitudes, our beliefs and our behaviours. Simply put, a compelling narrative can be responsible for the release of oxytocin that is also produced when we are trusted or shown a kindness. In turn Oxytocin enhances our sense of empathy and motivates feelings of cooperation and our ability to experience others’ emotions.


At a fundamental level stories remind us of our common humanity - what bonds rather than separates us, and importantly they connect people emotionally to others’ experiences, for example, their suffering and their triumphs. We here at Innovation Unit, through our partnership with National Lottery Community Fund in the Living Well UK Programme, have found that the gathering and sharing of stories from people with lived experience has immense power to change opinions, reshape practices and improve the quality of peoples’ lives.


STORY GATHERING


In what follows we share with you a snapshot of our experience of gathering stories of people who have used mental health services. We also consider the importance of gathering the stories of those who provide the services, for their lived experience too is an essential element of the mental health landscape.


We have heard time and again from storytellers - experts in their own lives - that when seeking help for their mental health, people rarely get to tell their own stories. How instead they are left un-helped by a system where standalone - often repeated - assessments are carried out by practitioners under immense pressure and how these assessments often capture and describe nothing more than a list of problems. Certainly not the essence of the person, or their inherent strengths and capabilities. In contrast, the act of the telling and the truly being heard can make a difference to both ‘patients’ and the ‘professionals’ who work with them. By engendering empathy, compassion and kindness an emotional connection is formed that can be more powerful than any intellectual or abstract reasoning, powerful enough to change entire systems.

In the Living Well UK Programme we focus on spending as much time as we can with those who have lived experience, bearing witness to their story and hopefully in so doing acknowledging ownership. We have fine-tuned what we do during this precious story gathering time to really try to capture a picture of a person’s day-to-day life. Spending time with them in their homes, or out and about with them, truly, actively, listening, making sure that they are ‘heard’, gathering as much of the essence of the person as we can, in every way we can. We also use specially designed visual tools to gather a sense of their history, their context, what is good and bad in their lives and their strengths, talents, hopes and desires. We hear about their experience of seeking help, therapeutic alliances formed, support and treatment received for their mental health, both what may have worked and in many cases what hasn’t. We hear their stories of resilience when help ends or how they fell through the gaps because support was not available at all.

We leave our storytellers having gained a rich picture of their lived experience, their perspective. For many people we find it is often the only time they have told their own story, in its entirety, in their own time, in the comfort of their own environment and in their own words. It is powerful and many have told us it is therapeutic.


STORY SHARING


Once we have collected a story the next step is to share it with the dedicated team here at the Innovation Unit. Clustered in a group with post-it notes, pens, white boards, markers and endless coffee, we hear each story, read by one of the people who heard it first hand. The stories are often painful to tell and hear; sad, shocking, anger producing. When the dust of emotion has settled the task of putting the stories to work begins. We carefully think through what we have heard. We talk. We consider. We look for similar themes that emerge in different stories, indications of concepts and systems that for many reasons may or may not be working.


We also need to create the right space for the story to be heard, felt, to inspire change, to correctly represent, be illustrative and help transform the mental health landscape of policy, services, communities and the people within it. We are very aware that stories need to be heard and shared in context, not just gathered and flaunted as ‘recovery porn’ or ‘patient porn.’ User stories are the lifeblood of practice development. They illustrate the truth of a service's impact on the person living that life, making a case for change, showing plainly and clearly what is wrong with the current system and what is right. They are gold dust. So we work on how to maximise the value of each story. After thinking about what a story is telling us we share them, and our thoughts, with our partnership sites, to be used as powerful tools to help them redesign their local offers and systems.


COLLABORATION FOR BETTER FUTURES


Stories, many different stories, need to be heard to enable change at an organisational level. Through hearing repeated and shared experiences we can together begin to feel and understand the impact of systems and processes on local practice and in turn how that is experienced by individual people.


However it is much deeper than this, having confidence in the evidence of lived experience has an impact; the understanding of people’s stories builds a common purpose, igniting a feeling. Like a call to action. As Marshall Ganz would tell us ‘a story communicates fear, hope, and anxiety, and because we can feel it, we get the moral not just as a concept, but as a teaching of our hearts’. We are moved toward a better collective understanding, a shared culture with a unified purpose. Stories bring hope to the many actors that dwell within the landscape, whether they are termed as service users, survivors, carers, providers or mental health professionals. They inject humanity into a system that a management culture has squeezed out. Reorienting system players around the people they aim to help, particularly when this focus has been lost or when more technocratic considerations have dominated the thinking and acting. They inform our practice and provide key material for processes that then lead to improved methods.


Hearing the voices of service users challenges the dominance of professional voices. Listening to stories, understanding the impact of their efforts in the context of people's lives can reconnect professionals and system players with ‘why’ they are there, why people have chosen their particular professions or why they have answered the call to leadership in the first place.


This is why it is so important to gather as many stories as one can. For example, the lived experience of ‘providers’, often neglected actors with their own unique context whose stories often harmonise with those of ‘users’; intricately interwoven, revealing parallel values, aspirations, disappointments and struggles. Only when we hear from all players on stage can the impact of each on the other be recognised and support for all be engendered and a ‘shared’ practice be forged. All in the landscape need to be empowered to seek possibilities and workable solutions. By making spaces for stories to live you create fertile ground for this much needed collaboration.


Telling and hearing stories humanises the failures at the heart of our way of operating. It dissolves the boundaries between humanity and professionalism. It does this safely alongside, but not within, the therapeutic alliance. It allows us all to return to altruistic, kind and caring beings, vulnerable humans operating in systems whose design can impede authenticity and stop us from putting our humanity first. By creating shared spaces for people to consider stories, ‘service users’, ‘carers’ and ‘professionals’ can become members of the same team working together for a common purpose rather than combatants each defending our own territory against the other. It can be remembered that each participates with good intentions and that as humans we want for the same things, health, love, happiness. In this working together, this coproduction, we become more than the sum of our individual parts and we can create and dream futures that benefit all.


Finally, one of the most important things we have to remember is that the story exists within the social, the political, the cultural and the economic context of its time - we ignore context at our peril. As a compelling narrative it will arouse within us an imagination of how things can be different - hope. Stories are what we tell each other in order to know what good might look like, they inspire us and they demonstrate the possibility of change. Individuals, communities, organisations and society benefit from the telling of stories. They are deeply valuable and used with care and sensitivity they have immense power.


Living Well UK is a National Lottery funded programme led by Innovation Unit. It supports four pioneering places in the UK to build Living Well systems of support for good mental health and wellbeing. Living Well systems put people's strengths and lived experience at the centre and are designed to help people recover and stay well as part of their community.


References:

https://hbr.org/2014/10/why-your-brain-loves-good-storytelling

The Recovery Narrative: Politics and Possibilities of a Genre. Angela Woods, Akiko Hart and Helen Spandler - 2019

Why Stories Matter, Marshall Ganz - 2009


Living Well UK Open Space, June 2020

Starting 4th June 2020 at 2pm - 3pm


Come along and share your stories


The Living Well team at Innovation Unit is writing to invite you to an ‘open space’ session, on the theme "Towards renewal: stories of humanity and hope".

This session will be hosted on Microsoft Teams - to receive the link, please email lwuk@innovationunit.org


The session is for anyone working in the Living Well sites to come together to share stories, and consider together what possibilities there are for a better future of mental health support, now and in the future, in the context of Covid-19.


The intention of the space is to provide an opportunity for connection, conversation and collaboration focusing on possibility - shared through stories.


The first session will take place at 2.00pm on 4th June 2020 and last for an hour.


A few ‘rules’ of engagement for the session:

  • Anyone and everyone connected to Living Well UK sites is welcome

  • You don’t need to sign up to attend, but if you are coming you need to arrive on time - so that we can start together

  • We will create the agenda together on the day


The sessions will be facilitated by Stacey Hemphill and Siobhan Edwards. Stacey is an Occupational Therapist by training, who worked in Lambeth Living Well and is the Practice Lead for LWUK across all sites, while Siobhan is Innovation Coach for LWUK in Edinburgh, and also works as a freelance coach and facilitator. 


We will hold the session on the same day and at the same time for 3 weeks. After that, we’ll review the regularity and length of the session. 


We look forward to seeing you.


The Living Well UK Team

How the NHS Framework for Community Mental Health Services can help


The most vulnerable and disadvantaged are likely to struggle the most with the social and economic effects of the Covid-19 crisis. This includes people with pre-existing mental health conditions (who are likely to have physical health problems too), people living on inadequate welfare benefits, victims of domestic violence, overcrowded families, and people who are already beset by loneliness. Evidence from around the world shows that crisis brings more misery to more people in these situations.


The question for mental health policy makers is: what kind of system has the best chance of supporting people to live the best lives they possibly can, at a time when the state’s finances and ability to help are at their lowest for a generation? Exhausted by the war effort, where are the seeds of renewal and hope?



Seismic shifts already underway


In the NHS, radical changes have already been pushed through in a matter of weeks. Anxiety about public health and the impact on the NHS has elbowed out long-held policy and practice:


  • Diverting access to mental health support away from hospitals

  • Restricting access - tightening still further the number of people eligible for secondary care, including stopping informal or voluntary admissions

  • Creating single points of access via phone lines - with a direct route into support from the voluntary and community sector

  • Closing mental health wards

  • Creating physically separate mental health A&E departments

  • Merging CMHTs

  • Delivering specialist clinical care and support virtually or in people’s homes


These and other changes could last a generation. Some NHS leaders and managers will not want to reopen closed wards, disconnect Single Point of Access phone lines, or cancel virtual appointments.


The NHS Framework - right time, right place


Some commentators, including campaigning mental health charities, may resist some of these changes, including the closure of hospital wards, and the resulting loss of beds.


But the NHS response to the crisis opens up a set of radical possibilities for improving patient outcomes, as well as making space to ask hard questions about the efficacy of traditional models.


We have an unforeseen but enticing opportunity to take insights, learning and new practices from the current crisis, and weave them into the development of new community models described by the Community Mental Health Framework.


The Framework outlines how the Long Term Plan’s vision for a place-based community mental health model can be realised, and how community services should modernise to offer accessible, whole-person, whole-population health approaches, aligned with the new Primary Care Networks. Published before the crisis (in September 2019), it aims to break down boundaries between mental and physical health, between primary and secondary health care, between health and social care, and between the statutory sector and voluntary and community sector.


The Framework guides the creation of new ‘front doors’ to local mental health systems - a single point of access for risk assessing, triaging and delivery of holistic, person-centred care that draws on the best clinical, social and community support.

People will be able to access person-centred help and support where and when it is needed, without relying on a system of tiers, waiting lists, referrals, hand offs, eligibility criteria, thresholds and repeated assessments.


Fundamentally, it puts the community back into community mental health. It recognises the contributory role that people’s strengths, social networks and wider community assets play in good mental health. People will be supported by multi-disciplinary teams and wider networks of voluntary organisations to co-produce their care plans and contribute to, and participate in, their own communities.


This kind of model is already being developed in Tameside & Glossop, Salford, Edinburgh and Luton - four places that are part of the Living Well UK programme funded by the National Lottery. You can learn more about their work here.


From disruption to redesign and renewal


For mental health practitioners, novel practice, experimentation and risk taking have become key features of life. They’ve had to - repeated cycles of social distancing is making it more difficult for community nurses, care coordinators, psychiatrists, psychotherapists and care workers to follow established protocols for care and risk management. For system leaders, crisis response is already giving way to recovery planning.


Disruptive moments like this can help shine a light on what is working and what is not, on what we want to stop, retain, change and grow.


New community models as described by the Framework are the strategically important place to focus local efforts on recovery and renewal, on radical system redesign for a post-Covid world. They are the perfect place to explore and design new ways to:


  • Enhance the role of communities in supporting more people close to home, including those who might not actually require support from secondary care/hospital care

  • Overcome fragmentation and redesign systems around the person

  • Embed risk assessment, prioritisation and triage within community based multidisciplinary teams

  • Respond more effectively to the intersectionality of social, economic and cultural determinants of health (including financial stress, poor housing and unemployment)

  • Amplify and sustain the countless examples of care, compassion and kindness we’ve seen in the last two months and build humanity into new systems

  • Invigorate a new public mental health narrative around the importance of mentally healthy communities of mutual concern and mutual aid - with local authorities playing a key role

  • Expand and rethink the role of the voluntary and community sector, including in ‘holding’ higher risk patients, and enable it to build effective partnerships as community connectors, social network builders and market shapers

  • Embrace technology as an integral part of service delivery (not just an ‘add on’), for example in finding creative ways of overcoming isolation and loneliness, or in enabling OTs, senior clinicians and peer workers to deliver virtual support fantastically well?

  • Help to rebuild the social fabric and community resilience that has been undermined first by austerity and now by Covid 19.


Innovation Unit is supporting more places in England to learn from the Living Well UK programme as they plan to deliver the new Framework.


We are researching the big shifts taking place in mental health and will soon publish our findings. If you are interested in learning from our work, please get in touch via nick.webb@innovationunit.org.





Living Well Logo

© 2019 Living Well UK

  • LW_TwitterIcon