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)

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.

 

Co-production shouldn’t be on Lonely Street

Tina Coldham writes on loneliness in co-production

A few weeks ago, I was at an event looking at employing disabled people in the NHS, or indeed increasing the numbers of disabled people working there.

I joined a workshop which was looking at co-production in the NHS with its services users, and there were two examples from a mental health trust.  They both seemed well meaning and had good user involvement to the point that they were co-producing, which was great to see.

I sat with them over lunch and chatted some more and one of the managers, who was a unit leader and had a certain amount of autonomy in his role, said that he felt “very lonely” at times co-producing.  This stunned me, and I asked him to say more. He confirmed to me that if the prevailing culture of an organisation is not to co-produce, then those that do so are sticking their necks out.  They can become very vulnerable to criticism and lack of support as they are viewed as a dangerous maverick by others within that organisation.

I thought about why it was that I was so shocked by his statement and considered my experience at the Social Care Institute for Excellence – SCIE. SCIE was established in 2001 and produces knowledge resources, bespoke training  and consultancy for the social care world to help drive improvements in users and carers experiences of social care, for them to ultimately have a better life.

From the beginning there was a strong emphasis on involving people who use services and carers and the first Chair of SCIE was disability activist Jane Campbell, now Baroness Campbell of Surbiton.  SCIE established a participation team who were dedicated to making sure users and carers were involved in SCIE and were properly looked after in doing so.

SCIE decided that it would step up to co-produce its work with service users and carers in 2011. It stepped up its ambition for involving users and carers throughout the organisation at a strategic and organisational level, made sure there was resourcing in terms of staff and finances to do this, and began a journey of discovering of what co-production means in practice in an improvement agency trying to help the social care field up its game.

So where are we now?  One of our cores values is to co-produce, specifically to “co-produce our work with people who use services and their carers to identify what works and how that knowledge can be put into practice”. We have a co-production charter to help guide our work. We conducted a board recruitment recently, and out of four new members, three identify as disabled people.

I am a board member too and I also chair the Co-production Network which is there “to support user, carer and equality groups’ involvement in SCIE’s strategic decision making and provide a pool of stakeholders which SCIE can work with to co-produce projects and programmes.”

We have a Co-production team of four within a staff group of less than 70, with a dedicated budget for its work and direct experience of mental health, disability and learning difficulties.  All staff are trained in why co-production is important to their roles, and we are now offering training and consultancy on co-production to the field from the perspective of knowing what we are trying to achieve and hoping to inspire others to work in this way.

From 4 – 8 July we are holding the first National Co-production Week, encouraging everyone to showcase their co-production work. We are also holding a co-production festival on the 7Th of July to celebrate all the good stuff happening, and also starting to draw up a co-production manifesto to get people and organisations to pledge to go the co-pro route like SCIE.

With all this going on, I hope that we can arrive at a point in future where no-one feels very lonely in an organisation when trying to work in a co-productive way.  Indeed, my challenge to you is to answer the question, “Can you give any examples of where co-production or user involvement has had a positive impact on policy or practice?”  We can then carry on the conversation together – and make sure co-production is never a lonely experience.

Tina Coldham

SCIE Co-production Network Chair

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.