The Silent Screams of Service Users by Steve Flatt and Pippa Hunter Jones

The silent screams of “experts by experience”.

There is a bloody battle going on in mental health services. It is not a battle fought with guns, bombs or knifes but the blood is real nonetheless. The suicide rate is rising, more people are dying of poverty and deprivation today than for many years. In 2013, in the UK, suicides reached a 13-year high, with population level data linking these suicides to austerity policies (Barr et al, 2015). The sick, frightened and disabled are the victims whose stories are rarely heard above the white noise of statistical analysis, learned papers delivered by earnest academics who are seeking to show how good their work is and please their political masters with tales of success and value for money.

The stories of those for whom mental health services, social services and benefit support did not work are airbrushed out with great swathes of digital images provided to the media in sound bites like, ““Having read thousands and thousands of transcripts, you can see the presence of the therapeutic relationship, and feel it in the same way as if you were reading a novel – you would feel emotions, fear, happiness. The written word will evoke emotion,” (Sarah Bateup, Ieso Health Independent march 20th 2017).

And reading a novel is the same as real life? – do we experience our lives as though we are in a novel? Ask a sufferer whose distress has not been lessened or help been offered, if their experience is like being in a novel, they will say it is more like a horror movie. Ask them if their story has been listened to and they will look at you as though you are an alien.

I attended the ERSC conference in York on 3rd March and listened to stories of service users whose experience of a “therapeutic relationship” left me feeling tearful and angry. Stories of prescriptive medicine, incarceration, labelling and a determination not to listen to the stories of the people the professionals are supposed to be helping.

There remains a powerful sense that despite the highlighting of our psychological wellbeing as a matter to be attended to, to improve the state of the nation, the reality remains that of business as usual; academics collate data; practitioners continue to deliver “evidence based” protocols that bear little relationship to a natural human interaction and ask clients to complete forms that measure the absence of failure rather than the presence of success and then declare that the intervention has produced a statistical recovery of better than 50%. The attention to the story and experience of the client is ignored – that the person has not changed their behaviour, been more sociable, able to be independent or carry out a meaningful activity is not measured or even recorded.

The McNamara fallacy describes the current state of mental health services beautifully:

“The first step is to measure whatever can be easily measured. This is OK as far as it goes. The second step is to disregard that which can’t be easily measured or to give it an arbitrary quantitative value. This is artificial and misleading. The third step is to presume that what can’t be measured easily really isn’t important. This is blindness. The fourth step is to say that what can’t be easily measured really doesn’t exist. This is suicide.” (Yankelovitch 1972)

The McNamara fallacy (also known as quantitative fallacy), named after Robert McNamara, the United States Secretary of Defense from 1961 to 1968, involves making a decision based solely on quantitative observations (or metrics) and ignoring all others. On this basis, according to the data the USA won the Vietnam war! The reason given for ignoring other “soft intelligence” is often that these other observations cannot be proven.

It is not the suicide of the service but of the person who experienced it – or rather – didn’t experience it. All the while the professionals continue to congratulate themselves on another superb set of statistics. Please remember that numbers don’t talk but people do!

“Partial or inaccurate information is often a crucial characteristic of the incubation period (toward disaster), but it is compounded by poor intelligence, the failure to seek out relevant data or interpret the available data properly. Cultures of denial, secrecy and protectionism, and fragmentation of knowledge about problems and responsibility for addressing them, are often implicated in such failures” (Turner and Pidgeon, 1997).

When will the stories of service users be listened to and the realisation dawn that an effective mental health service requires professionals to listen with a constructive ear to the people whose experience can tell us how professionals might be more effective? If we continue to assume that the professionals always know best and that their idea of a good service is based upon data, then the project that is “good mental health” is doomed to perpetual failure.

References:

Barr, Benjamin , Kinderman, Peter and Whitehead, Margaret (2015). Trends in mental health inequalities in England during a period of recession, austerity and welfare reform 2004 to 2013. Social Science & Medicine, 147. pp. 324-331

Turner, B.A., Pidgeon, N.F., 1997. Found in Martin G, McKee L, Dixon-Woods M (2015), Beyond metrics? Utilising soft intelligence for measuring healthcare data and safety, Social Science & Medicine 142.

Yankelovich Daniel “Corporate Priorities: A continuing study of the new demands on business.” (1972)

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Seminar 5: Speaker Biographies

Seminar 5: Narrative and regulatory knowledge in co-production.  

Speaker biographies

TTTricia Thorpe, Anti-stigma coordinator, facilitator of Real voices and Unheard voices of High Royds, encouraging people to share their experiences in form of storytelling, to challenge the stigma and discrimination around mental health labelling. ‘Everyone has a story to tell and we can learn by the journey that individual has taken, never be ashamed of your story it will inspire others’.

 

VF

Vanessa Findlay has been working with the anti-stigma team as a volunteer for the last four years. In that time she has used her lived experience in various training workshops to help individuals develop a more in depth understanding of living with a mental health problem. Beyond her volunteer work she is currently a student at Leeds Beckett University studying Psychology and Society.

 

MM

Mick McKeown is Reader in Democratic Mental Health, School of Nursing, University of Central Lancashire and trade union activist with Unison, playing a role in union strategizing on professional nursing. He has taken a lead in arguing the case for union organising to extend to alliance formation with service user/survivor groupings.

 

HS

Helen Spandler is Reader in Mental Health in the School of Social Work and an Associate of the Psychosocial Research Unit (PRU) at UCLan. She is primarily a qualitative researcher in mental health and critical social theory/policy. She is currently working on a number of research projects and is the Principal Investigator on a 2-year research project funded by the Joseph Rowntree Foundation on informal support. She is in the editorial collective of Asylum:the magazine for Democratic Psychiatry.

 

BSBrendan Stone is a Professor in the School of English at the University of Sheffield. His work is in the areas of social and civic engagement, teaching innovation and excellence, leadership in widening participation, and quality and diversity particularly in the fields of disability and mental health. Brendan is the founder and co-director of the University’s Storying Sheffield project, and a co-founder of the Sheffield Arts and Wellbeing Network. He is a Senior Fellow of the Institute for Mental Health, and a National Teaching Fellow of the Higher Education Academy.

 

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.

Some Thoughts on Seminar 5

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 Programme: Friday 3rd March, 2017

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.)

Programme:

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.

12.45 LUNCH

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