The User Movement in England - Position paper November 2000By Diana RoseThis paper outlines some arguments, both conceptually grounded and policy based, concerning the configuration of the users' movement in England. It is meant to be read as background to the Research Proposal with the same title. Some of these reflections are personal but they are not idiosyncratic. The arguments are based on shared experience, literature written by members of the movement and preliminary discussions with the contemporary chairpersons of two, rather different, local user groups in London. Historical reflections Campbell (1996) marks the beginning of the UK users' movement as the MIND conference in Brighton in 1986 [1985]. Although Campbell is careful to point out that patient activism existed before this and can probably be dated back centuries rather than decades, the MIND conference was important not least because it was where the national group Survivors' Speak Out was formed. In using the term 'survivors' and in making a membership distinction between survivors (full members) and allies, the organisation marked itself as radical. It drew up a Charter of Demands which in today's moderate climate of user involvement looks Utopian. Survivors' Speak Out was influenced by anti-psychiatrists such as Laing and Szasz and by survivors from North America like Judi Chamberlain. It took what Cohen (1998) calls an 'abolitionist' stance in relation to psychiatry. Two years after the MIND conference, Brighton again hosted a meeting that was meant to bring professionals and survivors together under the banner of 'Common Concerns'. The survivors objected to their low representation on the platform and re-organised the conference in front of the astonished eyes of leading lawyers and psychiatrists as well as dignitaries from Brighton. Louise Pembroke had a stand-up row with Sir Louis Blom-Cooper who was supposed to be representing progressive mental health lawyers. She told him that we did not want 'Community Treatment Orders' but 'Community Cuddle Orders'. It is also important to remember the policy context of the mid-1980s. Most of the old institutions were still open and the move to the community was not well-established. But the institutions were not taking many new long-stay patients and the new, generation of activists had both spent time in the institutions but were the first group of mental patients who were not consigned there for life. There was little community provision, no CMHTs, and treatment was by psychiatric in-patient and out- patient clinics. It was mostly medication. Largactil had opened the doors of the institutions and neuroleptics were now the main treatment in the community. The non- pharmaceutical community provision that existed tended to be social services rather than health or through voluntary groups like MIND. Matt Muijen's study of NHS community provision in South London had an 'experimental' group not just because it was a trial but in the sense of a real 'experimental' service, at least as far as the UK was concerned. This was the configuration against which the early local user groups were formed. Such groups included Brighton Insight, Nottingham Patients' Council and Camden Mental Health Consortium. I will take the latter as an example since I was there. The first Draft Constitution for Consortium is dated 1985, before the MIND conference. It contains no provision for users to be the only members, or a special, full category of member but refers to promoting a 'strong consumer voice'. What these historical reflections will show is that what this consumer voice was saying then is rather different to what it is saying today. Consortium was set up by two social workers and a service user to promote the consumer voice in the re-provision of services from Friern Hospital to the then Hampstead and Bloomsbury Health Authorities. Consortium meetings were held at the local MIND Centre whose Director was an extremely radical clinical psychologist. To this day, many user groups are closely allied with their local MIND and voluntary organisations are better able to tolerate, even embrace, radical workers than the statutory sector. This relation to MIND meant that Consortium meetings were very well attended. We regularly had fifty people at the meetings and they were people with mental health problems of all degrees and their allies. Because there were some people in Consortium who also belonged to SSO (don't ask me why people in SSO should live in Camden) and also because of the Director of MIND, Consortium quickly established a radical stance. There was complete continuity between the evolving national ideas and local activity and this is definitely not so today. This can be seen quite clearly in what happened in the group around medication. We advertised an open debate on medication and it was attended by more than seventy people. Nearly everybody contributed to the discussion and nearly everybody said that their drugs were damaging them. One member told of having an oculogyric crisis while he was driving a car. He hasn't driven since. What the users at that meeting wanted was not more information about side effects, which tends to be the call today, they wanted to come off their drugs. Furthermore, the collective anger against psychiatry bonded the users there as a group. The meeting was written up by myself and published in a CHC magazine. The local MIND had for some years been running a benzodiazepine withdrawal group. The Director said he was prepared to run a withdrawal group for major tranquillisers. Twenty people successfully came off neuroleptics. The psychiatric services were, of course, outraged. But there was little they could do. The users 'disengaged' and received help at the Centre and from each other. This would not be allowed today and it is very unlikely that anybody would take the 'risk' that that Director took. The important point to make in the context of this proposal is that there were no ideological differences between local groups like Consortium and national groups like SSO and that it was also possible to put radical ideas into practice. There were also far fewer local groups than there are today where the sheer number means a diversity of perspectives. There are two things to say about the early phase of the UK user movement. One is about anger. Many social groups have come together out of anger at their treatment by society - women and black people to name but two. The thing about anger in the early days was that it was collective and shared. It did not really matter if psychiatrists at Common Concerns thought that our anger was a sign that we were still ill or even becoming ill because we could not handle the stress of a big event. It did not really matter because the numbers of users were large and it was easy collectively to dismiss, even ridicule, the stance of the professionals. Solidarity enabled us to stand our ground. It is quite a different matter to be the sole 'representative' of a local user group on a planning committee. You have to keep your temper because any display of anger will be pathologised and used to undermine you. In this way the very structures of user involvement tend to mute the user voice. Collectivisation and sharing experience had another role in the early days of the user movement. It is very easy as a recipient of mental health services to think that you are completely alone and uniquely mad. If you are treated badly the temptation is to think it is because you are personally a bad human being. Indeed, sometimes this message is explicit. People who self-harm are often told they are attention-seeking and manipulative and that they are being stitched up without an anaesthetic 'to teach you a lesson'. Although people object to being treated as instances of categories, there is something very odd about being told you are psychologically abnormal. Being eccentric may mean you are 3 standard deviations above the mean but if you are mad you are off the bell curve, just not in the 'normal' distribution. Psychiatry is a thoroughly individualising practice in the bad sense of the term. Your delusions are yours alone, only you can hear the voices - nobody else can hear them. For some people in the early user movement, it came as a complete revelation that other people had had the same treatment as them at the hands of psychiatry. It was not because of their madness or badness that they were treated this way but because of a system that defined them in certain ways and treated them according to certain practices. After this realisation, it is not difficult to become part of a movement that is seeking change. Social psychologists call this process the formation of a 'positive social identity'. Many oppressed groups have turned their situation around and formed such an identity. For psychiatric patients, it is very difficult. Stigma and social exclusion mean that most people who can avoid it do not want to 'come out' as psychiatric patients. Feeling mad or bad, as defined by psychiatry, can mean that you don't think there is anything shared or collective about your situation in the first place. A woman can hardly avoid knowing that women form a social group, but a psychiatric patient can easily not want to be part of the group or even not know that there is such a 'group' at all. One of the achievements of the early user movement was to offer psychiatric patients a positive social identity as a 'survivor'. It was to value the experience of the survivor and to use it to help others and change oppressive systems. And it was to do this through an analysis that had been collectively produced by the movement. In other words, the early user movement provided an analysis of the factors which lead to disempowerment. Things are very different in 2000. It is quite common today to hear the word 'empowerment' bandied about without any analysis of what disempowered people in the first place. User Involvement User involvement as it exists today is very different to the heady days of the early user movement. In the first place, it requires a very special type of user. This is because the structures and the agendas (in the sociological sense) are entirely set by managers and professionals. They have been told that the have to 'do' user involvement and they are only prepared to do it on their own terms. Users have to attend managers' meetings and usually there is only one of them acting as a 'representative'. Managers rarely come to the meetings of the user groups. The user representatives have to be able to read and comment on operational policies and business plans written by managers and not the other way round. Even supposing users had access to all the information needed to write such plans themselves, this is not even considered as a possibility. This is agenda-setting in a big way. ' It is obvious that certain specialised skills are needed to do this kind of user involvement. They are specialised skills which most of the population do not have never mind most users of mental health services. The result can be that a small group of users are called on to do this work because they have the skills but even they are completely overloaded because there are not enough people to go round. At the same time, the preoccupation with plans and policies simply does not interest most local users who cease to be involved. Membership drops and meetings are only attended by the activists. There are two points. Users who do this type of work will likely have gone quite far in education and will disproportionately be middle class. The current Chair of Consortium is a retired businessman (!). Severe mental illness often prevents people finishing their education and it is difficult to catch up. People may well feel excluded because of this and feel that they do not belong in the group. At the same time, activists often have less disabling problems. This means that they will have had less contact with psychiatry and less contact with its more oppressive arms. They will not have the kind of anger described above and will likely take an 'improvement' attitude to services. That is, there is nothing fundamentally wrong with services just problems that need to be put right through a process of reform. The way in which managers set the agenda for user involvement can all too easily, turn user representatives into proto-managers. They help 'manage' the system in a better way. They have to start with the operational policy or the business plan before them - they can hardly reject it altogether without pulling out of the involvement process itself. And so they are reduced to proposing alterations to specific paragraphs and clauses or adding sentences here and there without questioning the premises on which the policy has been drawn up in the first place. In this way too, the role of the user representative is at best an 'improvement' one. It cannot be one which challenges the system itself. It could be argued that the very nature of the 'strong consumer voice' called for in Consortium's Draft Constitution has changed. It is no longer angry, it is no longer radical, it is no longer collective and it no longer offers a positive social identity as a survivor. It is focused on policy, it involves only a select few, it is about piecemeal reform and service improvement and the identity it offers those who-are involved is that of the proto-manager. I have been told that users who have achieved this identity can be very jealous of it because it offers them a form of influence that is new to them. There are still national groups and publications like Openmind and Mindlink packs provide forums. But SSO is struggling and many of the national groups are focused on specific conditions. Their leaders have been courted by government but the conclusion seems to be that this is tokenism. Openmind does contain radical positions such as Rachel Perkin's and Phil Thomas' and Pat Bracken's regular columns where both stigma and psychiatry are challenged. It also covers alternative treatments, such as Romme's approach to hearing voices. I do not know what the circulation of Openmind is but I would think that most ordinary users would find the price beyond them. But its existence and nature shows that the radical voice of the users' movement has not completely disappeared. Whether this radical voice has any influence is another matter. We reported in Users' Voices that about half the users interviewed knew about their local user group. But nearly everybody answered a question on how influential the group was by saying that they did not know. Although most groups produce newsletters, users have to be on the mailing list to receive them. There appeared to be no channel of communication between the groups and their wider constituency. Local user group meetings appear to be badly attended. Most of the people who attend are the same ones who are active in involvement. There seems to be no place in the current user movement for ordinary users. Of course, strictly this is an open question, something to be discovered in research. But if the analysis is correct, it yet again distinguishes the current situation from earlier days when large numbers of people came to local meetings and the mix of people was also much more diverse. It is possible that the radical stance in the users' movement now belongs to black users, or at least those who speak on their behalf. Since the over-use of psychiatry's more oppressive practices in relation to black users has been exposed, and since black users have first hand experience of this, it is likely that the anger that once bonded the survivor movement now belongs in the black community. Whether this will re-invigorate the survivor movement as a whole or become conceptualised as one more 'example' of racism remains to be seen. Black psychiatrists such as Kwame MacKenzie are putting forward arguments that 'psychosis' amongst black people has different origins than it does for white people. Appropriate treatment for black users is argued by many to lie in the black voluntary sector. Some black users identify more with the 'black' than with the 'user' part of the name. They see their oppressive treatment as deriving from their ethnic identity rather than their psychiatric diagnosis. Of course, this is not an either/or question as the concept of double oppression makes clear. This whole issue will need to be explored in detail in the research. From the above, the following research questions may be derived: Has the philosophical continuity between national and local groups that characterised the early days of the UK users' movement evaporated? What is the balance of activity between national and local groups? What is the dominant philosophy(ies) that characterises the 'user voice' today? Are local groups committed, whether they want to be or not, to a philosophy of service improvement? What is the extent and social mix of the membership of local groups? To what extent is there a place for 'ordinary' service users in the movement as currently configured? Are black users, or those who speak on their behalf, in a position to develop a radical critique of mental health services and do they adopt a 'separatist' stance? Policy The 'state of the art' of the user movement can be understood as the context within, which the patient involvement measures in the NHS Plan will be introduced. The first point to make is that whatever the limitations the research might reveal in local involvement activity, it is already more extensive in its scope than what is proposed in the Plan. PALS are a sad second cousin to existing independent advocacy groups, many users already carry out the spot visits envisaged for Patients' Forums with their local CHCs and increasingly it is local user groups who carry out patient satisfactions surveys. For instance, twenty five such surveys have been identified in London alone (NHSE, 2000). As well as already doing what is envisaged in the Plan, user groups are doing much more through all the representational work that is done on committees and planning bodies. One critical issue here is funding and resources because this work both relies on vast amounts of voluntary and personal commitment and also ties key people up in writing funding applications for absurdly small amounts of money which are usually time-limited. Nonetheless, the tenor of the proposals in the NHS Plan are consistent with involvement politics as it has been described above. Both sides are committed to a philosophy of service improvement and there will be no shake-up of the system. At least, not at local level. The only exception to this might be if user involvement strays into 'clinical issues' as in the recent campaign in South Wales against a new ECT suite. Crisis houses, for example, are no longer such a controversial topic but whether that is a 'victory' for the user movement is another issue. However, the issue is complex in relation to mental health. Whilst the assumption in the NHS Plan appears to be that psychiatric patients are the same as any other patient, other government documents address the issue of mental health specifically. Since at least Safe, Sound and Supportive, and especially since the publication of the Green Paper on Reform of the Mental Health Act, two issues have been pursued specifically in relation to psychiatric patients. One is the public safety agenda where psychiatric patients are pictured in terms of the risk they pose and the other is the issue of competence. In these documents psychiatric patients are singled out as a special case and in this way there is a tension at the heart of government policy. An example may illustrate the effects this tension may have in the context of user involvement and that is access to health records. The NHS Plan provides for electronic access to notes and for doctors' letters to be copied automatically to the patient. Access to health records has been a right since 1990 but the Act includes provision for denial of this right if seeing their notes would 'harm' the patient. This provision has been used disproportionately in relation to mental health (Jha et al, 1998). This is no accident since in the run up to the Act, the RCP argued that psychiatric patients should be exempt from its provisions altogether. The question then arises whether users will be treated as a 'special case' in relation to the cognate provisions in the NHS Plan and other provisions in the Plan as well. This might have the effect of galvanising the user movement, locally as well as nationally, as it will be seen as manifestly unfair. The role of mental health professionals also needs to be factored into the analysis as they may be the force that encourages policy makers to treat psychiatric patients differently to others. At national level, users are to be represented on CHI, NICE and the regulatory bodies. Here there is potential for conflict and a more radical voice simply because users likely to be placed in these positions are more likely to be aware of radical arguments. This is so, first, because they will have an established reputation which means they will have been around the users' movement for longer and so are more likely to have been exposed to the ideas that characterised the early days. And secondly, because it is in coming face to face with the establishment, for example on regulatory bodies, that differences are likely to be thrown into the sharpest relief. Again, these conflicts are more likely to be with mental health professionals than with managers and policy-makers. Paradoxically, if the latter tend to dilute the voice of the user by setting an improvement agenda, professionals may sharpen it by systematically ignoring or even silencing the user voice. They may do this by pathologising users as a group (if not the actual ones they are talking to), for example by means of competency arguments. Such intransigence in the end forces, rather than stops, debate. The main research questions arising from the policy context are: How can the current configuration(s) of the user movement be conceptualised in terms of a context in which centrally-driven involvement initiatives will need to operate? What difference will the measures in the NHS Plan make to user involvement activities that already exist - will they augment, consolidate or hinder them? Will special measures be attempted in respect to psychiatric patients, either by policy-makers or mental health professionals? Will the strategic and philosophical debate vary between local and national contexts? What will be the role and effectiveness of local and national sources of funding?
G:\NHS Plan\Position paper.doc 02 November 2000 16:44
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