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 easiest of roles. The section will conclude with an update on steps being taken to campaign for a national protocol of good practice in this area. For I believe a protocol of this kind is urgently needed to 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. Consultation practice is too often 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 organisations providing healthcare, social care, education, policing, 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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My role as "support worker" belongs in those structures. For over ten years I have played my own small part in this wider effort 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. And to that end I have supported groups of people with mental health problems to bear witness to their experience in ways that can change and influence how service managers work and how policies are developed. My role is a strange one, often rather exposed – on the one hand welcomed as a change-agent, a potential ally, on the other hand resisted as an unmanageable threat, and from all points of view seen as bit of an outsider, a free spirit carrying all colours. And after so many years in this role, I have drawn very few conclusions. Instead I find myself still confused and asking the following questions, all largely unanswered in my mind, maybe because they are unanswerable. |
The field of mental health highlights and confronts the fraught. tantalising and unclear boundaries between sane/mad, stability/tumult, order/chaos, control/release. These are fundamental dichotomies and the tensions they create run through each individual, through Society at large, and also - of course - through the services that deal with mental ill-health. 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 too frequently 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 still 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 of 2006 she and I sent a letter to the Right Hon. Rosie Winterton MP, the then Minister of State for Health Services, whose brief included 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. It was answered by a civil servant who noted our comments and sent us a number of coloured brochures with smiling faces on them, all about the merits of Involvement. We were disappointed by this response, because we know about Involvement and have seen the serious damage which can be done to some individuals who get swept up by it, whose armour is not thick enough to ward off the blows it can inflict or the cross-winds it can expose them to. We were advised that if we wrote in again, the Minister's screen of civil servants would see we were serious and pass the letter on the Minister. But no. We got a second civil servant this time, who had spoken to the first one and whose letter was rather shorter.
But, to be fair, the first one had also mentioned the launch, due early in December 2006, of the new Centre for Involvement, based in Warwick. I attended the launch and contacted its Director, expressing our concerns and giving details. I also attached the Read and Dewan principles. The Director did reply and said he liked the principles. But when I wrote again the line was dead.
In 2007, further letters went out to particular individuals in the NHS system, seeking to alert them to the dangers of making consultation and involvement a management requirement across the board, without any guidance attached for how to do it properly or carefully or responsibly. But the line has always been dead.
The latest development has been the writing of an article, an opinion piece for the magazine OpenMind. My article advocates again the need for a national code of conduct for user involvement and consultation in the mental health services, based on the Read/Dewan principles. The article is being published in February, 2009.
Rogan Wolf
January 2009
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