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06/11/08
Hyphen-21’s AGM took place on the night after Guy Fawkes, in the week of Barack Obama’s election victory (for a poem on the election result see “New Poetry” on this site)
22/04/08
Andrew Motion helped launch a new website for "Poems for..." at the Nehru Centre in London on April 22nd
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| Involving and Consulting with People who use Mental Health Support Services |
I am writing this section after working for over ten years as an independent “mental health service users’ support worker”. Neither the most elegant of titles, nor the clearest of roles. At the end of all this time, I am left with a sense of confusion, tumult, and often despair concerning the value and integrity of the work. The section will conclude with an update on steps being taken to campaign for a national protocol that will maximise the benefits of good user involvement and consultation while also protecting individuals, the integrity of the consultation approach, and indeed the integrity of the services themselves, from practice that too often is perfunctory, careless, ill-considered or even frankly destructive.
Successive governments and White Papers have effectively institutionalised service user consultation and involvement as essential components of services such as healthcare, social care, education, police, etc. To the wider public the whole topic may seem arcane ; to the people more closely involved it has become almost a mantra. Professionals in all these areas are obliged to make themselves as accountable as possible to the people for whom the services exist, their “customers,” their “service users.” This involves creating structures and procedures to ensure real public involvement at all levels of the services, in policy making and in service provision.
"At its worst, user involvement is just another form of disempowerment. A
user sits on a committee, having agreed rather than chosen to be there. The conversation swirls around them while they feel isolated, alienated and ignored, wondering if they can get their bus fare reimbursed. The manager returns to their office to work on the trust brochure that claims taking into account the views of users and carers is central to their philosophy”
Jim Read
Mental Health Today
December 2001
Jim Read is a trainer on User Consultation for central Mind. He helped to write the report “On Our Own Terms”
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What an opportunity, you might think, to make the services more true to their essential purposes, more accessible and responsive to the people on the ground who have to turn to them, often in states of deep helplessness ! My role as support worker has chiefly meant the facilitation of groups of people with mental health problems, to help them bear witness to that experience in ways that can change and influence how service managers work and policies are developed. And at the end of my decade in this strange and rather exposed position of “user support worker” – on the one hand recognised change-agent, on the other unmanageable threat, from all points of view an outsider and carrier of many an insider’s fantasies– the following questions remain largely unanswered in my mind. |
In the field of mental health, this fraught. tantalising and unclear boundary between sane/mad, stability/tumult, order/chaos, control/release – fundamental dichotomies – in this deeply complex and anxiety- provoking area of activity, are “user involvement” and “user consultation” real opportunities for constructive change ? Is this, after all, a creative and positive breaking down of the old Us/Them set-pieces, the creating of a new and vitalising connection, new healthier shapes ? The deployment and fulfilment of talents otherwise neglected, the invigorating of our whole community through its better, wiser integration ? The release of new energies ? The reduction of ancient fears, age-old stigmas?
Or is it all a charade ? A set of shop window displays and posturings ? A materialist nonsense that comes straight from Thatcherism with its hatred of most things, but among them community, co-operation, complexity and inter-connectedness, leaving only the Market – with its products and its “customers,” turning the skilled healthcare practitioner into a mere shop assistant who delivers a package over a counter, to order ? Might this, in fact, be just a different form of fundamentalism, which in the name of a worshipped dogma, attacks the community in its vitals, with almost malicious (and self-destructive) glee, by denying the delicate, complex and unquantifiable connections and reciprocations that hold community (and each of us) together ? Is “user consultation” actually a fundamental denial and rejection of the empathic skills and values that underlie health and social care and also Society at large ?
The fact that I am still here does suggest that I continue to think there are more positives than negatives in this territory. I conclude that user consultation offers real opportunities for improving the way care organisations work with people, the way care professionals address people, and the way policies are arrived at and implemented. Down the right hand side of this page are links to a collection of papers put together over the years.
“Many now feel that user involvement..has become appropriated by mental health professionals who seek to draw user/survivors into their pre-existing professional structures and systems with little regard for whether such systems (usually formal meetings and loads of paperwork) are actually appropriate or relevant to the user/survivors with whom they are trying to work”
Premila Trivedi
Simba User Group
Mental Health Today,
August 2002
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Most describe initiatives that have clearly worked. Others present ideas that others have found useful. Some of the papers have been published in magazines or on other web-sites. In sharing this list, I make absolutely no claim to exclusive merit. There is much work going on in the field of user consultation all over the country that is positive and exciting – just as there is much work going on in this field all over the country that is merely vacuous or positively damaging. If anyone reading this section knows of other positive iniatives and approaches that deserve flagging up, I would love to include them here, or else link over to them. So please get in touch. |
My own conclusion from the list of initiatives supplied here is that real user consultation is largely about being responsive and effective in reacting to good ideas that come from service users on the ground. This is a very different approach from the norm – which can be described as a/ including users in professionals’ meetings that follow the professional agenda at all times, and b/ holding open meetings for as many users as possible – service-run meetings being the common factor, the be-all and end-all.
“Where involvement is done well, it can be empowering for service users/ survivors and even help their recovery, but when done badly it can damage people’s mental health”
Dr Jan Wallcraft et al
“On our Own Terms”, p77
published 2003
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I propose that, on the contrary, inclusion in staff meetings is not a valid end or purpose for user involvement and consultation. Nor is a roll-call of names and numbers a valid measure of successful service user involvement and consultation. The only true aim and measure of good service user involvement and consultation is the care, sensitivity and skill with which the service listens to the people at the receiving end of its services and the effectiveness with which it acts thereafter in fulfilling promises it makes. |
The last of the links on the right hand side leads to a list of examples of what I consider bad practice in consulting with mental health service users. The examples are all true and verifiable, but to see them as events belonging only to a particular place and time, and being the sole responsibility of particular individuals, would actually be to miss the main point (hence names are not given). The main point is that these examples could happen anywhere, and I am quite certain that examples like them are common, because everywhere the requirement, the pressure and the working climate are common – and people under pressure don’t vary that much.
The pressure is coming from above and from centre. All steering groups on particular initiatives or projects are required to have “user representation.” Assessment of whole organisations includes the same obligation, with immense implications if they can’t come up with facts and figures that please the assessors - above all financial implications. If you do not pass our assessment of you, if there are not enough ticks in your boxes at the end of our assessment of you, your budgets will be cut. As simple as that. In research it’s the same. To obtain funding from us, show us your plans for user consultation.
It would be all right if people knew what standards there should be, what measures are valid. But they don’t and so it’s not surprising that the crudest measures are the ones that surface, and what constitutes acceptable user consultation has merely emerged by default as the norm of least resistance and least integrity. And the longer it remains the norm, the harder it is to question and challenge it.
If anyone wants to send in other examples of bad practice, (they have to be verifiable) I would be interested to receive them and maybe add them to the list published here. It is on the strength of stories like this that I have been arguing for several years now for a binding code of professional conduct in the area of user consultation. I have conducted my arguments locally, but without success.
It was therefore a vast relief to come upon the excellent report on consultation “On Our Terms” by Dr Jan Wallcraft et al and find that it recommends precisely the same thing.
The report was published in 2003 and can be found on the Sainsbury Centre web-site. Its conclusions and recommendations are based on input and findings from 318 service user groups around the country. It should command attention. I congratulate Jan and her colleagues on the report.
It proposes a set of principles as a guide for service professionals on how to consult with mental health service users with care and integrity. The principles appear in the right hand column of this section. They were drafted by Jim Read and Veronica Dewan, both prominent members of the user movement, and trainers for national MIND.
For me there are two key themes running through these principles.
One is that the process of consulting with people who have mental health problems requires skill and care – and under the umbrella of that word “skill” I would include the core relationship skills of accurate empathy, genuineness and warmth.
The second key theme is that, in all senses, real consultation needs the professional to go to where the people are – on their own terms – rather than stay put in the place and structures where the professional feels comfortable, requiring or beguiling the “people” to join him or her in that place and in those structures.
“On Our Own Terms” recommends that “A task force should be set up to develop a set of national guidelines for user involvement, based on the Draft Principles on User Involvement in this report (p. 63). The Department of Health (DoH) should then issue guidelines to StHAs, PCTs and NHS trusts (“On Our Own Terms” page vii).
This recommendation has not to date been followed.
Jan Wallcraft is on the Board of the National Institute for Mental Health in England (NIMHE)
During the Summer she and I sent a letter to the Right Hon. Rosie Winterton MP, Minister of State for Health Services, whose brief includes responsibility both for mental health and user consultation. We sought to alert her to the need for a binding code of professional conduct as a matter of urgency. We both signed the letter, which can be accessed here. Early in December 2006, Rosie Winterton helped to launch a new organisation called the Centre for Involvement which has a brief to promote service user involvement across all of health and social care. Apparently it will be looking specifically at mental health in the New Year. We shall look forward to seeing what follows and will record developments on this web-site.
Rogan Wolf
Sept 2006
Back to Top |
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From the Heart
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A paper that tries to give an insight into why much user consultation is still a clumsy affair.
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| File size: 77k |
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Invitation to a Meeting
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This is a short and almost true story that can act as a parable on how not to do it.
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| File size: 58k |
Click here |
Nine Values/Principles
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Nine Values/Principles which in my opinion underlie good user consultation.
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| File size: 92k |
Click here |
The Hyphen-21 Strategy
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A Strategy Document which resulted from three Away Days spent with members of a user group.
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| File size: 159k |
Click here |
A Diagram on How To Support
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A Diagram that describes a possible model by which a region or Trust supports good user consultation.
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| File size: 77k |
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How to Start a User Group
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A Proposal on how to help a user group to start (by equipping them, stupid, and helping them find their own common purpose).
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| File size: 61k |
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A User's View
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What's a Good In-patient Service? What Makes a Good Worker? A user view, (following an Away Day in Ham Convent).
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| File size: 93k |
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| Lancelot Andrewes of Coromendel |
This is actually just another of my rants in the disguise of an e-mail conversation with someone who is not called Lancelot Andrewes and does not work in Coromendel. But the real person who asked the question helped me push my thinking a few inches further on and I’m grateful for that.
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| File size: 151k |
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Crisis Card
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Several user groups have produced crisis cards.
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| File size: 101k |
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Letter to Rosie Winterton MP
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At the time of writing, Jan Wallcraft and I have just sent a letter to the Right Hon. Rosie Winterton MP, Minister of State for Health Services, whose brief includes responsibility both for mental health and user consultation.
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| File size: 103k |
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The Use of Video for Staff Training
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Two examples of how video can be used not only as a training tool but as a medium that empowers.
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| File size: 11k |
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| Online Directory of Local Services – a user-run web-site |
A trained core group of service users constructs and maintains a web-site which provides a directory, with contact details, of local community mental health services, initiatives and programmes. Users in all these services are also trained and supported to keep the core group informed of local developments as they occur, so that the Directory remains up-to-date. The project provides relevant training as well as being in itself a really useful activity. The web-site would be accessible to service users but also to local hospital and CMHT staff looking to refer their clients to services in the community. Locally this idea is just about to go into operation at the time of writing. There are examples of similar directories already functioning elsewhere.
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| A Ward Guide – composed by service users, working with the staff. |
The local user group approached its nearest hospital with an idea for a “patient-friendly” Ward Guide that could be given to new patients on each ward.
| File size (article): 10k |
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| File size (guide): 105k |
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| The Code of Conduct for Ward Rounds and similar meetings ; User involvement in staff recruitment |
These initiatives are described in more detail elsewhere on this web-site but also of course belong under the heading of user consultation.
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| File size: 57k |
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Examples of Bad Practice in Consultation
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These are all true and recent stories.
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| File size: 17k |
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 to view PDFs |