Culture is a container for everything else

john walsh.jpg

John opened the ESRC seminar on 19 May with some insightful comments highlighting the importance of culture – ‘culture is a container for everything else’.  For John, co-production is essentially about re-distributing power in ways which create the space for people to be the best they can. Citing the late Jo Cox – ‘We have far more in common than that which divides us” – John argued that co-production requires, first and foremost, that we recognise and value our common humanity.

John Walsh is practice manager for York Street Health Practice which is the medical team for people who are homeless and in the asylum system in Leeds. John has worked there over two decades – most of that time on the streets with people who are homeless. He is also involved in national NHS work, writing with patients, staff and carers and teaching on best care and best culture, service improvement and teaching.

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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

Reimaging professionalism while thinking about a new politics of mental health

Mick McKeown writes on the politics of mental health.

I have thoroughly enjoyed participating in the two seminars to date, dealing in turn with democratisation and values based practice as cornerstones of a reimagined mental health professionalism in a context of thinking about co-production. In my view, mental health professionalism certainly needs re-thinking and reorganising and the prospect of addressing the pivotal issue of power in the social relations of care appears to be central to any critical consideration of coproduction. Big questions arise in contemplation of the very idea of professional identity, and these go to the heart of considerations regarding how the psychiatric system is organised as a whole and the nature of relationships between staff and patients at the level of individual encounters. So, let’s make hay with all manner of co-conceiving, co-creating and co-constructing – of ideals, practices and politics!

If our task is to bring about an imagined, democratised and value based professionalism then arguably the means by which we arrive at this desirable end must themselves be democratic and live up to relevant espoused values. In this regard the seminar series has made an excellent start. The university spaces within which an ESRC sponsored seminar series is enacted, along with limitations on numbers of participants, can arguably affect the quality of democracy we are able to achieve in our deliberations. On the one hand, university spaces protect free speech and association, and allies can meet in reasonably convivial surroundings with an expectation of fairly polite, civil and respectful dialogue inclusive of difference. Alternately, if these debates are to have wider appeal and impact, reaching broader constituencies (crucially grass-roots staff who would have to adopt any new professional mantle and the diversity of service users engaged in contemporary mental health care – both, perhaps, alienated in different ways), then more turbulent encounters might occur. Anticipation that this may be a possibility must not impede motivations to deepen and broaden the reach of our discussions – and blogging is certainly one way to start.

These endeavours also take place in perhaps unpropitious times for forging the necessary alliances between staff and patient interests to take forward novel and progressive developments. Mental health services are beset with the negative impact of austerity policies. Similarly, the wider welfare state that provides valued support to many service users faces huge threats to its continued existence. Neoliberalism remains the orthodoxy, despite quite obvious material and ideological challenges to its credibility. The result, as remarked by Bauman, is a state of liquid uncertainty that is the enemy of consistent and compassionate care relations. Hence, services appear to be entrenching coercive and singularly bio-medical models of provision; constituted as much about control as care. In parallel, practitioner trade unions are engaged in a battle for survival and arguably adopt defensive, conservative or avoidant positions on change. Nevertheless, both new and old ideas circulate offering possibilities for more radical objectives, even if their realisation may be unsettling along the way. My professional discipline, has a new-found outlet for serious debate in the Critical Mental Health Nurses Network (https://criticalmhnursing.org/about-us/) and this is mirrored in other fora such as: The Social Work Action Network (http://www.socialworkfuture.org/), Psychologists Against Austerity (https://psychagainstausterity.wordpress.com/) and Critical Psychiatry Network (http://www.criticalpsychiatry.co.uk/). All of these seek alliances with each other and radical service users/survivors. It may even be the case that the current ascendancy of neoliberalism is the spur to change rather than an omnipotent and insurmountable barrier.

Peter Sedgwick’s classic book, Psychopolitics, first appeared in 1982, another period of austerity and the beginning of neoliberalism, and has been reissued this year, published by Unkant. Sedgwick was a Marxist activist who bemoaned the lack of sophisticated interest in mental health on the part of the British left and urged cross-sectional, democratic alliances to forge a new politics of mental health. Of necessity this must include ally-ship between labour movement groups, bringing in staff interest, and service user/survivor groups. Sedgwick neatly weaves a commitment to dialectical materialism with anarchist informed ideas for prefigurative alternative forms of care that should be uniquely democratic and responsive to mental distress. He rejected narrow bio-medicine but held on to the value of an ‘illness’ concept as a means for ensuring state level support for adequate service responses. As such, Sedgwick was highly critical of the protagonists of anti-psychiatry because their critique could be co-opted by unscrupulous politicians concerned primarily with retraction of state welfare provision.

Latterly, the emergence of campaigning groups such as ‘Recovery in the Bin’ and critical thinking initiatives such as Mad Studies and have opened up new vistas of criticism and contention. Mad Studies is informed more by identity politics than class oppression and materialism, but seeks inter-sectional solutions and, perhaps contra to Sedgwick, often takes an abolitionist stance to services as we know them. Thus, Mad Studies is the unruly, recalcitrant child of neoliberal times. Sedgwick’s politics pre-dated neoliberalism’s rise to power but rather presciently predicted what was to come for mental health services. If we are to thoroughly grasp the challenges of reimaging professionalism we cannot abstract this from such political concerns and undoubted tensions between staff and service user interests. That said, these are exciting times and more democratised and value laden approaches are open to us. These should not escape thorough contemplation and wholesale adoption for want of trying.

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.