Presented to Nottingham City Council organised Seminar on Disability Consultation,
12 September 2002
Thank you for inviting me to speak on the issues of consultation. I speak as someone who has been the receiving end of mental health services - and I also have a certain familiarity with wider disability issues, through working at the Disabled Graduates Data Bank, at the University of Nottingham, in the mid 1980s. I have also been a project developer for a number of years - so I feel I can understand the issue of consultation from both ends - from the viewpoint of a service provider too.
I was a founder member of the user movement in psychiatry in Nottingham in the mid 1980s and it seems to me that I, and quite a few people, have been through a process that can be described as a kind of progression.
Timid criticisms become bolder and the issues taken up get wider and wider
First of all we made the first timid criticisms of the institutional care we were getting. These were of the type "No, we did not want sugar putting automatically in our tea". Later I, like others, became somewhat bolder - even though my thoughts might be temporarily disordered with personal fantasies, this did not disqualify me from the insightful observation that the food from the hospital kitchen was arriving cold. Later still I, like others, wanted to say something about the menus - and then about wider questions of service delivery -and then about therapeutic issues and the therapeutic models, used by services that were provided for us.
We get invited onto the planning bodies and to participate in consultations
As time went by, some of us got invited onto planning bodies and invited to participate in consultations. After a time, however, it became clear that this was always commenting on the institutional plans made for us, but not by us. Mostly this was what the institutional care givers and service providers, were going to do anyway. It seemed, too often, as if we were going through a purely formal, and from our point of view, fruitless, process. It wasn't a good use of our time - especially when it became clear that, after the services had consulted, they weren't going to change anything of substance anyway.
Adding legitimacy to the things you intended to do anyway - our rubber stamp on your plans
In fact, our presence in the consultative exercise was adding a certain legitimacy to what the services wanted to do. As the institutions have all the information, the person power and budgets, as their staff are trained in a particular way - it all felt as if we were tamely expected to say 'yes' to what the juggernaut intended. And the institutional juggernaut is as easy to turn, or to stop, as the proverbial supertanker at sea.
Involvement becomes the new fashion
After a few years, user involvement, far from being seen as a threat, became the new fashion - and eventually the politicians and even Whitehall caught up - so that user involvement became 'must do' in the health service policy frameworks. Clearly government and civil servants get their ideas from the same conferences we all go to - which then re-emerge as policy about 10 years later, and watered down. There is a great fanfare, we are summoned to a consultation and told the government is going to insist on something we were asking for over 10 years ago. The result is that now there is as a whole new profession of user involvement workers - often expected to operate as isolated individuals in mental health teams, expected to deliver the user voice into service planning.
Service Users have agendas too..
Yet many user workers have their own agendas. And often these clash with what the services want, over the most fundamental things - like medication for example. When we talk about the things which are part of our agenda, and when the issues are really fundamental, it often seemed to little or no effect.
A relatively important example was the provision of services at weekends, and out of hours. People have been calling for this for years at consultations. So much good it did them.
But sometimes even quite small things are raised and do not get dealt with - the classic that I remember, admittedly from some time ago, was the case of the tea trolley with only 3 wheels on a psychiatric ward which went for months without being fixed. The reason is didn't happen is important - the procedures of the supplies department were too complicated. Create a vast institution and you create inflexible procedures because the co-ordination system becomes hugely complex, and the record keeping fiendish. In a small organisation this would not happen - someone would nip up the road and buys a wheel from a DIY shop, or ring up the manufacturer of the trolley and get a wheel sent down. The receipt would be stuffed in an envelope, for the bookkeeper to enter up when she comes in, later in the week.
That's why many service users and others were worried about the change over of Nottingham Healthcare Trust to Nottinghamshire Healthcare Trust. Would the new bureaucratic empire be sufficiently flexible to local needs? In fact virtually everyone who was consulted said that they were worried about that. Our opposition brought forth assurances that an effort would be made to keep services locally focused and flexible. But I wonder how far that has proved the case. For example, take Heathcote Arts - it's been one of the most successful and innovative bits of Nottinghamshire Healthcare, really popular with users. It's closed at the moment. But there is a research project going on about the arts and mental health. Its great that there is - but isn't that typical of big organisations. The real work on the ground withers, but there's a research exercise to help managers take informed decisions.....
Perhaps someone should remind Chief Executive Jeremy Taylor about hte promises of locally focused flexibility. When we were summoned to be consulted at the Mental Health Stakeholders Conference a year ago, he turned up and said that his message was, and I quote "One ship, one crew, one destination" - this message of homogenity under the senior managers is a very different message to local flexibility. If you were to use an appropriate metaphor it would be of a flotilla of different vessels with different directions and different crews.
When things like this happen people become disillusioned.
User involvement workers - listened to once politely, twice with irritation and then with hostility.
Meanwhile, pity the poor user involvement workers. What they have found, and what I found in my slightly different job role, was that if you express an opinion over something fundamental you get listened to politely once, then listened to with irritation twice and, then told that you are being "unhelpful". What you haven't understood is that the job of someone involved as a user involvement worker is to secure agreement. So then you are faced with the issue of whether to look for another job or not - or to feel that you are becoming increasingly inauthentic and betraying what you believe in. This happened to me when I raised issues about medication policy - it's still happening to user involvement workers now.
This doesn't mean it's all hopeless. In the mental health services user involvement workers can help individuals put their foot down for what they want. When they do however the usual interpersonal pressures come into play - as when a consultant says to a nurse with a different point of view, "I hope you're not being misled by what the user development worker is saying." So you can end up working in an increasingly poisonous interpersonal atmosphere - which isn't good for your mental health.
From commenting on institutional agendas - to developing our own
So the progression has been one in which people look for a way forward as they become disillusioned with the initial frustrating and disappointing experiences of'involvement' . One response, over the years has been that many people have moved on from commenting on the agenda created for us, to a more pro-active form of empowerment. In the early 1990s for example, I practically gave up taking part in any of the consultation processes. I didn't bother to "get involved" more than tokenistically as I simply did not see it as making the slightest bit of difference. More than that, I had come to the conclusion that consultation and involvement was bad for my mental health. It wound me up too much to be 'involved'. I would sometimes make an intervention on an important matter, as, for example, when there was a spate of suicides in Nottingham Healthcare, but then I withdrew, when I had raised the issues and got the ball rolling. I felt I had to back out after a point, as I found that I was getting too worked up at seeing the sham - like, for example, noticing the clever choice of words used to cover up what the managers knew, and weren't telling us. I concluded that the mentally healthy thing to do was to walk away. I had my limits as an individual, taking on a juggernaut, and to have had another breakdown would only have discredited me. It would be more than futile, it would have been counterproductive.
Developing one's own agenda means developing our own organisations
At this point, my view was that, what mattered, was a form of empowerment where one developed one's own agenda, developed one's own organisation, accumulated resources to do things differently - in order to show the alternative way in practice. What that meant for me was the development of an organisation called Ecoworks.
Since people with mental health problems are isolated, inactive and poor - and repeatedly say that these are the problems that they really want solving - it was necessary for mental health service users to be able to meet, and do meaningful things alongside other people, ideally in ways that would cheapen their cost of living. This is what we have done through our community gardening and other activities. It is why I helped set up Ecoworks and after a few years it was operating with over £100,000 turnover, with 150 volunteers a year - many of them people with mental health problems. We were working with 20-30 service users a week. Even now, with hardly any money, in the middle of a funding crisis, we are working with almost the same number.
A few years ago I guesstimated that Ecoworks was providing meaningful day activities for a tenth of the cost of the official services - and only one untrained mental health worker was (partly) involved. Everything about the community garden was self created. Consulted about the garden hut? The users built it, largely with doors recycled from Mapperley Hospital. Consulted about paths and steps and activities? They constructed the paths and steps and choose the activities for themselves. Where the services built a one million pound centre for users we helped users build a very large hut in the gardens, with woodburning stove and vines up the wall for nothing. Guess where many people would rather be!
We were also, please note, the only project which was providing weekend activities for people. We did this deliberately because this was what users said they wanted. Of course, there was no continuation funding.
Of course, we're expected to fail.
Yet when I started the manager of the local mental health services said he would not support Ecoworks as it would fail. Many years down the line it has indeed been in difficulties - because we have found it difficult to get continuation funding, when Lottery money ran out. Everyone knows that it is successful as a mental health project but there is little money for it. This is because, currently, first priority goes to spending millions of pounds on new types of brain destroying tranquilisers, the so called "atypicals". After being told they must spend on the atypicals the local mental health services had only £5,000 left last year to keep the activities in Ecoworks going, out of an underspend.
Incidentally the known side effects of the 'atypicals' are that people put on a lot of weight. Ecoworks is meanwhile working with a group of mental health service users on a healthy eating project and how to stay at the right weight - or helping overweigh people lose it. They've got hundreds of thousands to help people put on weight - and we've had a grant of about £5,000 this year for a project to help them eat properly.
Having shown it works - will our organisations don't get mainstream funding.
It's easy to get cynical and bitter To be fair the social services gave Ecoworks temporary bail out money and we've been very grateful for that - but it has not yet been mainstream funded long term. For me this raises an important question. If you show that a different way can work in practice, that it is successful and wanted by service users - and then you still do not get your different approach resourced, what hope is there for your interventions in ordinary consultative processes? Is it only the pet projects of managers and politicias that get funded?
I'll leave other people to answer that question.
Research for consultation
Meanwhile, as I was working on developing Ecoworks, other colleagues in the user movement were trying to resolve the same problem of frustration, at the lack progress of 'involvement' in different ways. One of the problems, when you are a user 'in the planning process', if you say something the managers and professionals disagree with is that they say - "but that's just your personal opinion. How do we know that you are representative?" So many users responded with the idea that they would go into the important issues in a rigorous and scientific way. Since "evidence" is supposed to be central they have set to work to get it. Then they could turn up with research reports on the matters under consideration - reports which are written by talking to other service users. It's not so easy to ignore a research project conducted with a certain amount of scientific rigour.
The therapeutic dimension of research
That's also therapeutic by the way. Mental health problems are often about being out of touch with reality. Researching things is about questioning, finding out and exploring. It's about learning how to find out, by asking questions, and being objective - the very opposite of psychological fantasy. What you have here is 'user involvement' of a more credible kind - which is also deeply therapeutic.
Service Users Monitoring Services
In fact, nationally, the user movement in psychiatry is now building up quite a research expertise. There are even professors involved who have had mental health problems and organisations like the Mental Health Foundation have given strong support to this approach. In Nottingham there is SUMS, Service Users Monitoring Services. They have developed research skills and systematically interviewed other service users in order to do their own evaluation of services.
One thing leads to another. I have recently been working with SUMS - the research skills SUMS group members have developed can also be turned to other purposes, and in other directions. I've been working with them on researching occupational stress and mental health issues in the voluntary sector - this means that their research interests are not exclusively focused inwards, to the mental services they are themselves using, but outwards, to the problems of other people and other kinds of organisations.
In the next few months I am also going to work with them on a research project around healthy eating. We are going to do a short training course on food and nutrition issues, including about food safety and sustainable food production, and then visit and interview service users in other projects, to enter a dialogue about food and nutritional topics.
Returning to the starting point - the example of consultation about food.
I started my talk to you by anecdotally mentioning the early days of the user movement - and I cited taking up dietary questions in care institutions, so it's appropriate perhaps that I return to food and diet at this point. You will notice, however, that this is not, as at the beginning, about 'Speaking Out' to say that the food is cold. I am talking about an arrangement in which ex users and users train together on issues of sustainable food production, diet and nutrition, and then visit other mental health projects and research users diets. Because Ecoworks has a catering trailer we will organise sample meals and food sampling sessions and do the research alongside these catering events.
Consultancy not consultation..
The role here is no longer that of supplicant, begging to be treated with respect. It's more than superficial consultation, on the plans made by the big institutions. What I am suggesting is an arrangement in which we are to be regarded as consultants - in which our input is based on training, on research, and on expertise acquired, partly, in the development of own organisations. It is a model in which we expect to be regarded, and treated, as the equals of the managers of the big institutions. Indeed these managers will often find that we can provide the model for the cheaper and more effective services. That is the way we get back respect for ourselves and re-integrate into society as full members.
Will these things make any difference though? Well... maybe... a bit. But the institutions and policy making processes are becoming bigger and bigger. As they do new layers of managers are laid on top of the services, there are endless reorganisations, things are considered in great length, in paper exercises, but on the ground things get more difficult, more impervious to real change - or actual wither and die, like Heathcote Arts. Many years of experience makes me rather pessimistic about how much change is possible in the mainstream institutions - because change is being led from further and further away from front line practicalities, by managers who are good with illusory performance figures and finance, but know nothing of the front line work of their organisations, except what they can glean from a half an hour visit. The gap between rhetoric and reality is covered with public relations. So I'm sceptical
Prove me wrong, if you can. However,...... one keeps on trying because that's what it means to live an authentic life, as opposed to being a careerist functionary, keeping ones nose clean in a big machine and eternally chattering about the latest policy fashion as if it was somehow exciting good news, when you were saying much the same yourself ten years ago, and have moved on ages ago.
Brian Davey (Sept 2002) Voluntary Sector Mental Health Development Project at Ecoworks, c/o ICC, 61b Mansfield Road, Nottingham, NG1 3FN 0115 9112522 firstname.lastname@example.org
© BRIAN DAVEY