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)

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 4: Contemporary Developments in Mental Health Policy and Commissioning Seminar Notes

Reimagining professionalism in mental health: towards co-production

Seminar 4: Contemporary Developments in Mental Health Policy and Commissioning: a help and/or hindrance to power-sharing

Hosted by the International Centre for Mental Health Social Researchesrc-big-logo

University of York, Friday 28 October

Many thanks to all the people who participated at seminar 4. Very lively and productive debates!

Below we have provided some written notes on the presentations, discussions and your concluding thoughts from seminar four.

The powerpoint presentations will be available on the blog shortly, and the ‘talking head’ videos and short videos of excerpts of presentations will be made available on the blog in due course, as will Adam’s poem. Please be reassured that if you have been filmed as a presenter or ‘talking head’, you will be able to see the video and decide whether or not you wish it to be made available on the blog.

Seminar 5 Reconciling regulatory knowledge with co-production will be on 3 March 2017 at the same venue (Research Centre for the Social Sciences, University of York).

 ESRC Co-production https://coproductionblog.wordpress.com/

Follow on twitter@ https://twitter.com/ESRCcopro

Best regards,

Martin & Pamela

 Anne Rogers: Commissioning of self-management support

There are social and economic drivers of meeting mental health needs – education, employment, housing and criminal justice services have to respond to the well-established impact of not being in work due to mental health problems. How does commissioning and mental health policy respond to this? There is a recognition that improvements are required, but there are many priorities for investment. Some commissioners have taken a more integrated, social approach such as in Nottingham which includes advocacy, open door project and other socially-oriented services. However, the hidden impact of bureaucracy prioritisation of risk management remains the ‘elephant in the room’.

There is a tension between local aspirations and those identified by NHS England for empowering people. There is a need to focus more on early strategic planning of lay involvement to provide an avenue for genuine engagement of individuals and communities in a meaningful way. A capability approach is required which focuses on what an individual values and can achieve.

Commissioning needs to be re-oriented towards understanding and enhancing the power of social networks. There is good evidence that behaviours within networks as a collective phenomena reinforce ‘unhealthy’ behaviours, but can be used positively for behavioural change. Self-management of our health and mental health involves weak ties within our networks (connections to people within communities such as shop keepers, taxi drivers, postman/woman). The power of these weak ties is under-estimated. In addition, there is evidence that participation in community organisations is associated with better physical and mental health, particularly among people on low incomes who are more physically active.

There has been a rise in non-medical aspects in NHS commissioning in mental health. For example, pets are valued for companionship and social engagement, but they are not routinely included on mental health care plans. There is good evidence that they support people’s well-being, but there are few opportunities for personal commissioning of pets.

Mapping social networks provides a positive disruption to what people focus on in their daily lives. Externalising away from the self is very valued. When people see their network they can see how they can mobilise it, or identify gaps to enhance their connectivity. Genie is a method of visualising networks and connecting people with local resources. It requires some resources locally to keep it up to date and live, but is a useful tool for people to use to enhance connectivity within local areas.

Karen Newbigging: Co-production in commissioning: Are we there yet?

The commissioning cycle is a process which involves assessing needs and assets; planning, which involves engaging with all sectors of the local population; securing provision of services through contracting and monitoring the services through measurement of outcomes. In reality, it is often more messy than this. What is crucial, though, is involving local communities in the process to ensure local needs are met.

Involved in commissioning for mental health, there are 209 Clinical Commissioning Groups, 152 Local Authorities, individuals with health and social care personal budgets and NHS England who commissioned specialised services. Commissioning is diverse, but social movements, activism and collective advocacy are important in the commissioning process.

Co-production in commissioning is an equal partnership throughout the commissioning cycle. It is a form of deliberative democracy and should be values-driven. It requires a move to asset-based approaches and a shift to a social model, which values the importance of social context, individual values and preferences. Decision-making should be transparent and accountable.

In practice, this requires:

  • Getting the foundations in place with proper resourcing and support
  • Framing the questions differently
  • Defining outcomes to commission against (‘I statements’)
  • Using a range of methods to co-design and co-assess services
  • Working with voluntary and community groups to engage seldom-heard groups
  • Confronting the ‘D’ (decommissioning) question

Where are local commissioners on the co-production journey? Looking at Arnstein’s ladder of participation, the impressions in the room are that commissioners are generally not. However, Lambeth Collaborative; UK’s first Mental Health Parliament in Sandwell; Making a Difference (MAD) Alliance in North West London; and Newcastle social prescribing scheme were cited as good examples.

Commissioners view commissioning as a rational process and emphasise getting the right structure and processes. Providers see it as a ‘fine-tuning’ process to get their services right or as a way of exerting leverage on commissioners. Service users and the public see the process as being a wide spectrum of activities ranging from direct involvement in care to more strategic purposes.

What do commissioners need to do to support co-production? Some of Karen’s suggestions:

  • do it together – deliberate purpose and methods
  • attend to organisational culture and build capacity for co-production
  • invest in and support user groups / patient forums / voluntary sector to build capacity
  • tolerance of ambiguity and understand and use a plurality of methods and approaches to engage all sections of the population
  • deliberate the limits – are there any?
  • build co-production into contracts
  • share and learn from successes and challenges

Joseph Alderdice & Danielle Barnes: From the street to the strategy

Joe introduced the Leeds Mental Health Strategic Partnership which includes the NHS, local authority and voluntary sector. This includes 150 people with lived experience and many identities, such as networkers, activists, artists, poets, peer supporters and researchers. Lived experience is essential to co-produced commissioning. In reality, this means connecting as humans not just in the boardroom but beyond this. Meeting in community cafes or neutral spaces helps to see commissioners as fellow human beings.

Based on shared values, it is possible to define priorities and competencies, and design and deliver training. “Community development is about working with people to find solutions, support them and then get out of the way”.

What’s in it for people who engage in the commissioning process. Reciprocity is really important – people must get something out of it rather than just contributing to it. Peer support is an important component of this, but also is validation of their perspective. Co-producing system change is like turning around an old ship getting blown away in the wind. We need to harness individual energies, but support them through the process.

It is difficult to influence change across whole systems where some people are very distant from co-produced activities or do not draw upon lived experience.

How genuine is co-production? Are the ideas / plans already in the heads of commissioners? How does co-production influence this?

In conversation with Danielle Barnes, Joe discusses the (West Yorkshire Finding Independence) WY-FI project which involves people who have lived experience of mental health issues, substance use issues, offending or homelessness. This includes peer mentoring. Co-production is about finding the problems and developing the solutions together. WF-FI project is an example of meeting people where they are rather than expecting them to ‘come in’ and receive a service. Trust and reciprocity are key to this process.

Where do we go from here? What can we take away from today?
Take co-production beyond this forum It’s all in the language, we’re all people! The term service user perpetuates traditional (not co-productive) services
Need to move beyond principles and work out more detailed strategies for co-production. ‘The devil is in the detail’ A buzz and sense of excitement that should enable us to spread the word – maybe even into ‘hostile’ territory…
Develop master class on co-production for commissioners. Karen Newbigging may have resources available Think about the financial implications of participation in co-production, especially for people with mental distress
Build alliances across stakeholder groups  
Shift focus from ‘mental’ health to optimal health. Question mental/physical health divide