5th ESRC seminar – Stories and narratives in mental health

Just a few notes on the thought provoking contributions to the second York seminar on 3 March 2017.

The starting point for the seminar series was that co-production should involve authentic power-sharing and a fundamental democratising of relationships connected to wider issues of citizenship. We’re all too well aware, of course, that reality stands in stark contrast with this ideal. Professional practices tend to be based on a zero-sum understanding of power that perpetuates the privileging of professional knowledge over expertise by experience.

Seminar 5 focused on considering whether personal testimonies/stories have the potential to contribute to more democratic and humanising practices in mental health. In other words, can co-production through storytelling legitimise expertise by experience so that survivors are reinstated as citizens?

The speakers offered different perspectives.

Tricia Thorpe and Vanessa Findlay – What is a story? What is a narrative?

Tricia emphasise that through exchanging our stories we learn about each other, we become interested in each other, and we find commonalities in our experiences. Stories are powerful and have an important effect on others.

Tricia shared her experiences of mental health services – abused, over-medicated and institutionalised. She identified how it took a long time for her own story to influence her own care plan. One nurse supported her art interests and she was gradually empowered to find her voice. This was integral to her recovery. “We need to prove ourselves”, but sometimes we try to take too much on board leading to failure. Listening is important, but we are losing the ability to listen and talk. Our stories will only enter conversations if people listen attentively and with openness.

Stories often get lost in mental health services as we are too rushed. Relying on form-filling dehumanises people. We need to listen and learn about people. People are known by their diagnosis rather than being recognised as people (with legitimate knowledge and views) who have much to contribute.

Vanessa shared her story and described how thoughts and emotions in childhood affected her. She used self-harm as a way of controlling emotions and releasing them. Bereavements and challenges at home contributed to her distress. However, she kept it from her parents and saw CAMHS without them being aware. She was angry and frustrated. She hated herself so much that she wanted to self-combust. At 18 she wanted to stop and sought a career in mental health nursing, but a year in things become challenging for her. She wanted to end her life and had a series of hospital admissions due to a series of suicide attempts. It has been a long journey for her, but she is working towards recovery.

What is the impact of story-telling for Vanessa?

Vanessa finds it empowering to share her story. Professionals’ notes become quite different from her own story. By telling it, she re-takes ownership of her story. It engages people and enhances connectivity.

Tricia and Vanessa’s stories raised questions regarding the legitimacy of certain types of knowledge and ways of knowing. Professional knowledge excludes personal testimonies, and professionals are not ‘permitted’ to view their own stories as a source of expertise. Professional expertise is defined almost uniquely in terms of formal knowledge, and this means that much is lost. But how do we find the time for stories?

Mick McKeown & Helen Spandler – Truth and Reconciliation in Psychiatry

Before genuine progress ca be made, a process of truth and reconciliation is required which can result in changes in power by enabling democratic and dialogic deliberation. Perhaps we need a truth and reconciliation process before we can do something more authentically co-productive. Healing is required and we cannot assume neutrality. Power imbalances impede genuine coproduction. Acknowledgement of the harm which psychiatry has caused is a necessary precursor to co-production.

There are models of trauma-informed care which recognise that mental health services can re-traumatise people. We need to bear this in mind when considering co-production. Being critically-minded is important.

Public apologies for harm caused by mental health system is required, but perhaps unlikely to happen. However, in the US a process of truth and reconciliation is happening. They started with the idea of healing circles which brought together survivors and workers. They told their stories, without interruption or judgement. It was about acknowledging their experiences. It brought together people who felt damaged and those who felt helped by psychiatry. This process enabled these people to have a dialogue.

Will truth and reconciliation work when ‘psychiatry is God’? The power of psychiatry within the mental health system still needs to be challenged, but a truth and reconciliation process could help to empower people. Revolutionary change in services will not happen overnight – it is a long process towards change. Listening to individual stories is integral to the process.

Brendan Stone & Shirin Teifouri – The Impossibility of Co-Production

The word “narrative” goes back to the ancient Sanskrit “gna,” a term that means “know”. Stories are a way of knowing the world. Brendan describes himself as a ‘narrative sceptic’ – stories are a way of telling the truth (for today), but the story may change tomorrow. So what’s authentic today may no longer be relevant tomorrow.

Stories can be oppressive. It is possible to forget all the other aspects of yourself if your narrative/story is all about distress. Emphasising the suffering can exclude or occlude other aspects of your humanity. This needs to be considered when thinking about story. Not everybody thinks about their lives in narrative or linear terms as one continuous story. Brendan sees himself as an ‘episodic’ who sees his sense of self as discontinuous over time. Episodics do not regard their present self as the same self which existed in the past or will exist in the future.

Ultimately, we can only get close to what it is to be human by using language which is poetic. Often fragments of conversation are the important ones.

Imbalance of power in mental health services stands in the way of genuine co-production. Power relations are implicated in the construction of mental distress and limits the stories that can be told. Narratives of risk and harm are imposed on people. Perhaps we should start by co-writing narratives about risk or harm and policies.

Co-production is both possible and impossible. Perhaps we need to think in terms of co-presence: that is full, active, transformative participation>

Mental health discourse in the UK is not inclusive or culturally-sensitive. Everyone has a voice, but not everyone is heard. Being a member of a minority is akin to being ‘stateless’ – a non-citizen, and therefore powerless. Can co-production be possible where there is a fundamental asymmetry of power and one partner is ‘stateless’? Co-production requires that everyone questions their own values and assumptions – it requires an openness which is very hard to achieve, especially for those with power… We have to ask ourselves “How willing am I to be changed?” Unless we are all open to being changed, then co-production is not possible. We must consider which ways of knowing are permissible in the co-production space.

Co-production is an aspiration (a process rather than a destination), but we need to have a vision in order to enable us to keep on walking in the right direction. Co-production is ultimately a utopia but one that can inspire and energise us to keep walking in the right direction.

Seminar 3: Co-Produced Poetry by Adam Montgomery

To conclude Seminar 3 (hosted by the University of Leeds) spoken work artist/poet Adam Montgomery (aka “Ad-verse”) created this poem from the impressions and reflections of the attendees:

Co-production is underpinned by an authentic sharing of power

It would seem this notion causes some mental health professionals to cower.

Participatory citizenship creating spaces to be human & share.

Instead of us and them can’t it be that we all care?

We have more in common that not and that’s true across the board.

Allowing peers a chance to help each other is its own reward.

It helps to help and given the chance people will provide insight and support.

There’s great value to be found if we allow inclusivity of thought.

Social networks empower allowing space to develop relationship skills.

Money matters but surely there’s real value found outside the bills?

Who controls the purse strings? Can we dip into the pot?

Resources might be limited but co-producing can bring us a lot.

It’s an opportunity to do thing differently, changing status quo

Who describes the purpose? What are we trying to show?

What does co-production mean? Is there a clear definition?

Are services willing to share power or do they treat the term with suspicion?

Are mental health professionals essential for co-production?

We can invite them to play a part but do they want to be in the discussion?

Sustainability & transformation can be found by consulting all

Each can make a contribution be it large or small.

Some services currently operate on compulsion and coercion.

Will co-production allow for more democracy and co-operation?

Democracy redefined and power equilibrium shifted on the way.

Supporting resilience and survival of self but letting people have their say.

It shouldn’t be tokenistic, how do we make it authentic and true?

For genuine sustainable co-production what do we need to do?

Vested interests need challenging and minds opening would be a start.

Tapping into the human connection which we all hold in our heart.

Decisions made with people for people, services to fit users needs,

A person centred approach which encourages people to do good deeds.

Allowing people a chance to help others realising it helps to help & grow.

Positive outlets for effecting real change allowing hidden expertise to show.

More meaningful working relationships between services users and providers.

Acknowledging often the most expertise is found within those insiders.

The patients, the people being treated, those with the problems often hold solutions

These can often be found by enabling meaningful contributions.

SO many opinions in the mix, who’s to say which one is right?

Perhaps we all have some valid points without enquiries we won’t have insight.

Some are resistant to change, change takes time and time is money.

The complex nature of organisations and their cultures is far from funny.

The term can bring confusion, what does it mean and what does the language reflect?

I think it’s about all having their say and being treated with respect.

Given opportunities to play a part in positive changes for systems and self.

Knowing you’re valued can do wonders for self-esteem and mental health.

Self-esteems often taken a battering with decisions being made for you not with.

Together in coproduction we can hopefully make it easier to live.

Where does co-production live? It should be in the community.

For everyone to play a part and for all effected and involved to see.

A quality approach to develop excellent services, hearing the voices of all.

Allowing people to contribute with empowerment fundamental.

Interdependence, collective humanity, transformation & change.

Overcoming inertia and seeing room for systems to be rearranged.

Service user involvement and a willingness to share throughout

I know co-productions possible but that there are many who doubt.

Some people are resistant to change but that doesn’t mean we shouldn’t try.

Services can cause frustration but being heard can help good come from the sigh.

Taking time to consult with people letting them play a part with some ownership.

Empowering through real life opportunities and support should they happen to slip.

We’re all people with assets and issues whichever side of the needle we sit.

Co-production can be a positive thing with a need for clarity when defining it.

Who are you going to co-produce with and what will you create?

We’ve co-produced with mother nature to produce a very warm state.

So I’m sure some of you are wondering if the end of proceedings are near.

I’m happy to announce that at least for my bit the end is finally here.

Bob Sapey on Language in Healthcare

Bob Sapey, a participant at the first seminar, kindly provided this fascinating piece on language in healthcare.

It is possible that in replacing undesirable labels, we risk creating new ones that become signifiers of the devaluation we were trying to combat, but this is insufficient reason for not acting to better the impact of our language in the present as unequal power relationships may be maintained by our language.

In the field of social work the term ‘service user’ came into use following the implementation of the 1990 NHS & Community Care Act in April 1993. In that new world of social welfare based upon notions of consumers rather than clients and in which community care was portrayed as a desirable service with choice rather than the state controlled safety net of the National Assistance Act, new labels were required and by the end of that decade ‘service user’ had emerged.

However positive the intentions of this change, it did not take long for the term to assume negative connotations; I recall a student on placement in a CMHT in 2000 telling me that in the canteen culture of this team, the term had come to mean the people who used up services and caused shortages, much as the term ‘bed blocking’ blames older patients for political and professional failures to adequately resource and manage health and care services.

1997 saw a significant change in the way the Department of Health used the term service user. Whereas prior to this time the Social Services Inspectorate had given advice on how to work with the inherent tensions between disabled people and carers, from this time policy documents always referred to service users and carers, reflecting the new government’s aspirations in terms of consultation and co-production. Policy forced the two groups together and began to establish them as a single group in the minds of professionals; the tensions were meant to have disappeared in the new reality constructed by this government.

Shaping Our Lives, a national service user network that wishes to promote a positive view of service users as active, say that the term can be used to restrict a person’s identity to one of passivity in an unequal relationship. Fundamental to this perspective is that individuals should be free to determine if they consider themselves to be a service user, this is not the role of the service providers.

Some individuals are comfortable with the service user label, while others are not for a range of reasons including simply finding it unnecessary. Many people have argued for other labels that they see as more positive such as survivors of the mental health system, or disabled people, or experts by experience, each of which reflect personal and political experiences. Survivors is a term borne out of experiencing the mental health system as brutal and unhelpful; disabled people reflects an experience of society as unequal and disabling, as having been constructed by non-disabled people for non-disabled people; experts by experience is used to create an equality with experts by profession in situations of co-production.

Language changes as the meaning of words change. I recently co-edited (with Helen Spandler and Jill Anderson) a book called Madness, Distress and the Politics of Disablement. When we first got the contract we were not permitted to have the word Madness in the title (although clearly we made the argument for its inclusion later). It was considered to be demeaning rather than reclaimed. Throughout the book we used the term ‘madness/distress’ in order to accommodate different identities and whilst this might be viewed as grammatically clumsy, it was meaningfully, politically and socially essential.

I think the power of language is probably in the way we use it, rather than in the innate qualities of a word. But because of the way words have been used, they may assume certain meanings of which we need to be aware and wary.

Bob Sapey

I am a member of CCrAMHP (Critical and Creative Approaches to Mental Health Practice) which is a group of people who come together to discuss ideas. The group consists of people who have and do not have experience of mental distress and over the past 5 years this has included art, community, medical, nursing, psychology, social work and teaching professionals, school and university students, and people who were not employed.

http://www.ccramhp.org.uk/

Before retirement I worked as a university lecturer and prior to that as a social worker. I have been involved with the disabled people’s movement for over 30 years as a social work activist, a writer and a researcher. In the last 10 years I have had similar relationship with the Hearing Voices Network. My experience of working with disabled people and with voice hearers has predominantly been one of being invited into activities that they control and of sharing my knowledge or skills.