This project takes a critical look at user involvement. It coincided with a major review of day services in Somerset. The first part of the project is a critical review of the literature surrounding user involvement. As part of this literature search there will be an attempt to find a distinct user perspective. Then the day services review will be looked at to see how it fares as a process of user involvement.

Part of the research was about finding out about research itself. Judi Chamberlain has described a test to see how much say users have in running a mental health facility is whether the staff and users have different toilets (Chamberlain, 1988). Perhaps a test of user-research friendliness, could be whether users have equal access to libraries. The photo below perhaps paints an unfair picture because neither the statutory authorities nor their librarians could have done more to facilitate this research. Yet perhaps the caption ‘staff only’ reflects some reluctance to see research as a legitimate form of user/survivor participation. Also, the fact is users do not have equal access to library facilities.

As regards user/survivor research, Kathryn Church (1997) describes how she created a ‘survivor frame’ for mental health research. She argues ‘for survivor participation’ as those practices that ‘unsettle’ the comfort of mental health professionals in their relationships with service users. Peter Beresford argues that one of the problems of user-research is the barrier, that only values research that is associated with ‘objectivity’, ‘neutrality’ and ‘distance’, has to be broken down (Beresford, 1999). Yet Beresford believes that there are an increasingly respected approaches to research which question accepted assumptions about ‘objectivity’. These approaches, including ‘participatory’, ‘emancipatory’ and ‘user-controlled’ research’, are open about their values and have the clear aim of trying to change things (Beresford, 1999).

This project attempts to be based within these relatively new research approaches. Following Midgley (1992) it hopes to question the ‘normative’ language of user involvement and develop, rather than stifle, dissent. The project starts with an extensive literature review about user involvement.

In analysing the literature surrounding user involvement one of the initial difficulties is in identifying common strands. The terms ‘user’ and ‘involvement’ separately and together have generated a great deal of discussion as to what they mean. For example, Barker and Peck (1987) outline a range of terms that have been used to describe user involvement such as empowerment, consultation, choice, advocacy, representation and participation. Similarly there have been many terms used, such as (service) user, survivor, client, ex-psychiatric inmate, patient, consumer, as well as medical terms such as schizophrenic to describe those seen as ‘mentally ill’.

User involvement has been acknowledged as problematic (Levenson, 1992, Brandon, 1991). One possible reason is that the Griffiths Report inspired legislation, The National Health Service (NHS) and Community Care Act (1990), which has been considered as providing a top-down impetus to user involvement, failed to specify how it might be done (Griffiths, 1988). This lack of clear guidelines on user involvement has been seen as allowing professional opinions on involvement to dominate (Walker, 1993). One problem is trying to agree what is really up for debate when one talks of user involvement. Is it simply about involving service users as ‘consumers ‘in either their treatment, or in planning and evaluating services? Or is it something more than that? Is there a real transfer of power to service user? Does it include users running services themselves? What about involving users in determining questions such as whether Electroconvulsive Therapy (E.C.T) should be used? It is these sorts of questions that this project hopes to at least raise if not answer.

According to O’Hagan (a New Zealand Maori), user/survivor participation is a bit like biculturalism in New Zealand – between the indigenous and colonising population (O’Hagan, 1993). The colonisers, and their parallel the mental health workers, often think the process of participation or partnership is going better than the disadvantaged group who typically feel it is tokenistic. This theme of different groups conceptualising things differently runs throughout the project.

"People who call themselves survivors feel that consumers are dupes for believing that the mental health system has any value at all while survivors are tough freedom fighters. On the other hand, consumers believe that there is no shame in working for change within the mental health system and that, in fact, the survivor brand of loud, rude criticism only delays reform."

(Everett, 1994)

As far as the United Kingdom goes, ‘service user’ seems to be the favoured term to describe people who use mental health services (Hutchinson, 1999). Yet there is evidence that it is not a popular term among those who are described by it (Read, 1999). In Australia the term ‘user’ has been rejected in favour of consumer. The term ‘user’ was already associated with drug and alcohol service consumers (Wadsworth and Epstein, 1998). In America, the term ‘user’ again seems rarely used. In one survey in America, by Mueser at al, (1996), the term eliciting the most support was found to be ‘client’ (45%) (cited by Hutchinson 1999)

However, in the USA like the UK a protracted debate goes on about terminology. Support Coalition that claims to be the largest group of mental health consumers champions the term ‘survivor’. The term refers to ‘survivors of a mental health system which eroded our confidence and dignity, and survivors of difficult life experiences which took us into the system.’ (Bell, 1997). This double-edged definition has been seen as a challenge to the mental health system that in the USA prefers to use the word consumer. The confusion over terminology is reflected in the use of the expression c/x/s (consumer/ex-patient/survivor) in exchanges on the Internet.

This debate about terminology may appear superficial yet may echo more underlying issues. For example, in the 1970s militant organisations like the Insane Liberation Front were formed and their members used terms such as ‘ex-psychiatric inmates’ to describe themselves. More recently in the UK, groups such as Reclaim Bedlam have used terms like ‘mad’ as a way of self-definition. It may be that wider influences such the gay rights movement and their ‘gay pride’ slogans have affected the user/survivor movement.

"I won’t be a nine to five robot,

Well oiled and made of chrome.

I will never have your ulcers

Or a split-level home.

You tried so hard to change me,

You bullied and you sneered.

But I will always remain just like I am,

Loony, crazy and weird.’’

(Song sung by survivor activist Judi Chamberlain at the American Psychiatric Association in 1981)

‘‘How are we going to deal with people who are proud to be mad?’’

(Psychiatrist at the same conference)

The above dialogue points to an obvious contradiction between those who accept a ‘medical’ version about symptoms, prognosis and treatment and another group who talk about a culture of madness. This exchange also reveals that when one refers to user involvement one is describing a process that involves both staff and users. Two criticisms of previous attempts to involve users are that they fail not only to address power issues (Barker and Peck, 1987 and Thompson, 1994) but that they ignore ideological issues (Glenister 1994). It is perhaps instructive that users who have written about setting-up user-run services have stressed the need to consider both power and ideology issues so as not to mimic existing services (Lindow, 1994, Chamberlain, 1989).

Wadsworth and Epstein (1998) suggests that when people from one dominant discourse (those working in the mental health system) speak to those from a subordinate discourse (those who use mental health services) the dominant discourse perhaps need ‘unpacking’ as it is ‘embedded in language’. Julie Johnstone, a user researcher in Australia, has written a discussion paper called "Consumer Narratives in Psychiatry: Conceptualising the Subject," which points to the main obstacle of psychiatric services meeting consumers' needs as being centred on the fundamental dichotomy between ways consumers and psychiatric staff conceptualise matters (Johnstone, 1998).

She writes that psychiatrists, and hence other staff, tend to conceptualise psychiatric problems according to "an explanatory method which limits the conceptualisation of the psychiatric subject to an object."

Julie quotes Ben From the Mental Patient to the Person (Barham, 1991) as showing how professionals and their clients, even those who accept the notion of ‘mental illness’, may have conflicting perspectives:

‘’I have got a mental illness, I wouldn’t contest that I haven’t, but I believe that their heads are full of chemistry and my head is full of politics and social things. So that is the conflict that won’t ever by resolved’’ (Barham 1991)

The studies by Barham of 24 users of mental health services trying to live in the community, and of 516 users and ex-users by Rogers and Pilgrim (1993), do suggest that many users seek non-medical explanations for their events of their lives. Similarly Levenson and Joule (1992) saw a barrier to user involvement as the way they believed that users subjectivity was ‘anathema to the world of medicine, which locates itself in a scientific, and therefore apparently objective framework.’ As illustrative of this differences in conceptualisation figure 1 and figure 2 both attempt to develop the idea of a user/survivor perspective. Figure 1 gives users’ perceptions of some professional mental health language (Wadsworth and Epstein, 1998). Figure 2 illustrates a user/survivor perspective by focusing on the phenomenon of ‘hearing voices’.

As far as failures to address power imbalances, this has been seen as most pronounced in those approaches to user involvement that are characterised as ‘consumerist’ (Berry 1988, Morrison 1988, Smith 1988, Croft & Beresford 1990). Various commentators have suggested the existence of a consumerist as against a democratic strand of involvement. (Robson et al, 1997, Croft and Beresford, 1999). The consumerist approach is associated with a reform agenda and linked to the New Right whereas the democratic approach has been seen as more radical and linked with the emergence of disabled people’s groups, self-advocacy and civil rights organisations and movements. It has been seen as more influenced by so-called anti-psychiatrists such as Becker, Szasz, Goffman, Foucault, Cooper, Fanon, and R.D. Laing who provided an academic challenge to the accepted psychiatric mainstream. These so-called (so-called because none of them accepted that label (Double, 1997)), anti-psychiatrists have been interpreted as reflecting the post 1968 New Left world (Karp, 1996). Democratic involvement is seen as more about involvement as a ‘citizen’ than simply as a user of mental health services. It has been viewed as taking a more liberational and critical approach.

Concern about the notion of consumers is tied up with its association with the New Right agenda and its emphasis on efficiency, effectiveness and economic management (Thompson, 1994). There is concern also that there has not been enough critical appraisal of the language of reform. The notion of consumer is difficult to maintain particularly when there is the issue of forced treatment (Taylor et al, 1992). Smith argues that unlike the consumers of commercial products, ‘consumers’ in the mental health system may not know what is available.

Winkler (1987) suggests that the consumerist approach is about ‘customer relations not patients’ rights. The supermarket version of consumerism "…requires little serious change but much public visibility. It is about the appearance, not substance of change."

Figure 3 attempts, at the risk of over-simplifying matters, to elucidate some of the themes in ‘user involvement’.

Figure 3 A systemic view of user involvement (adapted from the work of Thompson (1995) and Midgley (1992)

Although there is a danger with diagrams of over-simplifying matters, figure 3 suggests looking at user involvement in a systemic way may raise hitherto hidden issues. For example, Thompson (1995) building on the work of Midgley (1992) argues that involving users on a ‘consumeristic’ level may further marginalise more radical users. Following on from figure 3, it would be convenient to see a clear pattern. Yet to cloud the picture Everett (1994) suggests that there are those who see the notion of two separate movements as overstated.

"If the managerial and professional interest in user involvement is limited to a consumerist desire to ask if people are happy with the service offered, there is clearly a disparity with the interests of service users and survivors who challenge the basis of the service altogether." (Jane Thompson, 1995)

Related to the discussion about power is the issue of ideology. For some users the issues that concern them are the over-emphasis on the medical model as an explanation of their situation, the use of psychiatric drugs, the use of electroconvulsive therapy (ECT) and forced treatment (O’Hagan, 1993). Yet what many organisations are offering in terms of user involvement are discussions about how services are delivered not whether they should be delivered at all (Robson et al, 1997). Whilst psychiatrist Anthony Clare argued in 1976 that British psychiatry has remained ‘ideologically’ free this seems to presume that psychiatry itself is a neutral activity (Clare, 1976). However, Busfield argues that psychiatric intervention is not value-free and it is the medical profession, by virtue of the power, status and authority it has achieved, that ensures that psychiatrists are at the top of the hierarchy of the occupational groups involved in the care of the mentally ill. (Busfield 1986) It is this identity as doctors that gives psychiatrists the power to determine the content and character of mental health services. There is evidence that the medical model dominates mental health services. One survey of 117 staff meetings on an acute ward found that although the opinions and knowledge of other professions were considered, all the decisions that emerged were within the medical paradigm (Whittingham and Parsons, 1999). In Pilgrim and Rogers’s study of 516 patients mentioned earlier, 98 percent were prescribed medication. And to counter those who argue that psychiatrists have become more elective by incorporating elements of psychological and sociological thought into their ideas and practice, critics argue they have done so in a selective manner and have transformed and moulded them into a form that is more consistent with their own ideological perspective (Pam, 1994).

Again there may be a difference between how more ‘consumeristic’ users as against more ‘radical survivors’ see the domination of the medical model as an issue. Rogers and Pilgrim (1991) suggest that those users who accept illness models of ‘mental distress’ tend to opt for reformist agendas in line with consumerism. In contrast self-called ‘survivors’ like Chamberlain (1988) who "explicitly reject the label of ‘consumer’, with its depoliticising implications of freedom and choice" appear to question the whole concept of ‘mental illness’ as an explanation of their distress.

On the service provider side there is an argument that those professionals who closely adhere to a medical model find the notion of user involvement most difficult to accept. For example, Fuller Torrey, a pro-biochemical psychiatrist argues that:

"Assuming that someone with schizophrenia is capable of making intelligent decisions regarding his or her own needs is like assuming that a person with heart disease has normal cardiac function and can run a marathon."

(Torrey, EF (1986) Finally, a cure for the homeless: but it takes some strong medicine, The Washington Monthly, 10, 95-97)

There is wider evidence that those professionals who subscribe to a strongly biological view may be less reluctant to involve users. The Report of the Lemon Tree Learning Project (Epstein and Shaw 1997) found that some staff could not make the conceptual leap from seeing

‘’patients as objects..dictated by the classifying, therapeutic and limiting language of the medical model to seeing consumers as people with a range of experiences and opinions to contribute, including their involvement with mental health services.’’

.

This is a difficult question to answer as some users like Judi Chamberlain, a strong critic of psychiatric services, argue against co-operating with the system. It is not only radical survivors who believe that an oppositonal rather than partnership approach is most productive. Forbes and Sashidharan (1997) argue that a true user perspective has always stemmed from resistance – from an ideological oppositional rather than a consumerist position. On the service provider side Bowl (1994) found that not all staff saw more user involvement as a positive move. For some this reflected a view that staff were best able to judge the best interests of ‘vulnerable’ users. Another motive was to protect users from the pressure of decision-making.

Previous studies which have looked at user involvement initiatives include a survey of 42 local authorities by Miller et al, (1993), a survey of 42 voluntary organisations by Robson et al (1997), Bowl’s (1995) survey of 31 local authorities and interviews with 135 users and Philpot’s (1994) study which looked at user involvement in Clwyd, Swindon, Salford and Leeds. One common theme was an idea of a continuum of user involvement from minimal involvement to users running services themselves (Philpot, 1994). In a slight variation, Bowl and Rose suggest that user involvement can be seen as moving along a ‘power transfer’ continuum from post-hoc consultation to pre-agenda consultation to real power sharing. Yet they found most initiatives have been characterised by little power being transferred and that often involvement took the form of post-hoc consultation after decisions had been made and key staff were committed to a particular plan and not about real power sharing. Croft and Beresford (1990) found that 70% of user involvement was limited to consultation. Miller at el (1993) categorised involvement into four stages – giving information, consultation, involvement in planning and management and user control. Yet they found that information and consultation were the most common forms of involvement – only rarely were users given full decision-making powers over the planning of their own care, or devolved power in strategic community care planning

One reason for the limits put on what is on offer Berry (1988) suggests is a fear of really listening, a fear of what may be demanded. Miller et al (1993) quote one chief executive as saying ‘’my nightmare is that a group of highly political users will take over’’.

Another study of user involvement categorised approaches into four models (Levenson and Joule,1992). Model 1 is referred to as ‘the tell me you love me’ approach which are approaches that are mainly about asking users about services. Pollit (1988) termed it the ‘the charm–school-and-better-wallpaper’ approach. Users get to choose, for example, the colour of the wallpaper but not raise clinical issues. Levenson and Joule (1992) believed that this model ‘’is often the main plank in apparent attempts to involve users’. The next model they refer to is ‘the kill them with kindness model’’. This sort of approach is seen as about involving users indiscriminately without thinking through any strategy. For example, users may be asked to attend meetings but find that they have only ‘observer’ status. The third model ‘The Godfather approach’ is one where managers may identify key figures in the user community and divert all efforts at user involvement through these individuals. This may lead to incorporation of these key individuals into the system and they may lose the trust of the wider user community. The final type of model is one where existing organisations such as Community Health Councils (C.H.C) are ignored as unrepresentative and the management set up their own groups. Levenson and Joule (1992) felt that at the time of writing their report it was too early to comment on such a model.

It seems that for all the good intentions of authorities there seems scepticism about the real motives for involving services. For example, Richardson (1983) warns of the danger of participation as legitimisation, where service users may be invited to comment on an issue, not so much to value their contribution, but in order that the involvement of service users will appear to sanction the final decision. North (1993) believes that there is a danger that users’ opinions could be managed to the extent that debate is stifled. Robson et al (1997) suggest user representation on governing bodies is a visible, high profile action that hints at an influence and position of users that may not reflect the true relative powers of users as against other interest groups.

Sue King gives provides an account of some of the difficulties of being a ‘user’ on a mangament committee (King, 1996). She gives a simple example to illustrate how she and rest of the committee viewed issues. The management committee was critical of members spending too much time playing pool rather than attending a computer course. Yet Sue wrote in her own report ‘I hear what you are saying but…’, ‘’a one-year basic computer course once a week could be intimidating and pool for the users was seen as way to relax, spend time with their friends, get to know new members, share experiences, counsel each other, develop new skills; all this while they are having fun.’’

David Brandon believes ‘’the real sign of whether users have a say in running services lies in who appoints staff. There are five ways:

(Brandon, opening speech ‘Skills for people Conference’ in 1992, quoted in Bowl & Ross 1994)

Yet Bowl and Ross (1994) found that the majority of authorities did not involve users in staff selection and there was resistance to changing this. Philpot (1994) believes that the worst kind of involvement in staff recruitment, the ‘trial by sherry’ where users are asked to meet the interviewees but are excluded from rest of the interview process still exists.

As regards budgets, Miller et al (1993) reported that ‘’very few authorities involved service users in the allocation of budgets.’’ Given that many of the attempts to involve seems to be on the bottom rungs of the ladder of participation, it is perhaps not surprising that Bowl (1995) concludes that research into user involvement reveals little evidence of ‘’power sharing as opposed to consultation’’.

Robson et al’s (1997) survey identified various problems in sustaining user involvement. They found that user involvement often depended on particular personalities and if they left or lost interest the initiatives folded. Some respondents referred to a ‘Mafia’ of ‘professional users’ who were involved thus excluding wider involvement. Miller el al (1993) found that if only a small number become involved they could be seen by others as too close to the authorities, or be expected to do too much and become exhausted and burnt out. Some users were more interested in new user managed organisations and were less willing to contribute to traditional agencies (Robson el al, 1997). Wallcraft says if users don’t appear to want to be involved ‘‘look at your own agenda,… your agenda may be different from theirs and you may be trying to impose your own ideas of empowerment but this was not what the clients want’’ (Walcraft, 1996) . Concern from professionals focussed on the representatives of service users particularly on the idea that articulate service users might not reflect the views of ‘typical’ users (Miller et al, 1993). Though David Crepaz-Keay argues that often the label ‘unrepresentative’ is used to silence those seen as too outspoken (Crepaz-Keay, 1996).

Another barrier to user involvement is that of staff attitudes and professional worries – one extreme case reported was where a group of psychiatrists rejected a ‘users’ manifesto’ and threatened to sue the user group for libel (Miller et al, 1993). Miller et al (1993) found users felt staff didn’t understand the barriers created by previous experiences of powerful professionals, particularly if they had been detained compulsorily nor the power differences reinforced by example, by their high levels of dependency on staff at times of crisis

As far as ‘good practices’ in user involvement, Bowl and Ross (1994) found what was crucial was for people to see it as a positive experience, and to feel listened to, with a conscious attempt made to prepare individuals for the role and that they had opportunities to feed back their experiences. Opportunity should be given for users to prepare for meetings and to consult their peers, including going through the agenda and minutes, and opportunity for debriefing. There is a need to consider the location and timings of meetings. Bowl and Ross (1994) found users wanted training in areas such as confidence building, assertiveness and group skills if they were to participate more.

As far as addressing the issues of power, Midgley (1992) suggests that there should be recognition that when users are involved there may be an in-built imbalance of power. Providing an opportunity for service users to get together on their own gives them an opportunity to build their own perspective. Judi Chamberlain has talked about ‘conscious-raising’ among service users, and the independent forums that several respondents in Bowl’s (1995) study mentioned may help to achieve this. As for the notion of involving both ‘radical’ and more ‘consumerist’ users, Thompson (1995) suggests that forums for dissenting viewpoints need to be established. This would prevent what O’Hagan (1993) sees as the danger that only service users who share the main concerns of the authorities will be accepted and supported.

Robson el al (1997) suggest staff who work closely with users need training as it was felt that they might be less keen on user involvement because they did not know what it entailed and might feel unsupported. Some other suggested ‘good practices’ that may be pertinent to the day services review are the need to broaden the base of involvement by complementing face-to-face meetings with questionnaires, suggestion boxes, surveys and one-to-one interviews (Philpot (1994).

Finally Philpot (1994) says that there needs to be realistic expectations about involvement. He suggests that ‘the number of users actually involved is always likely to be small’. His work in five localities found that the maximum number of users in any one locality directly involved with health and social services was 15.

The day services review was one of the first initiatives of the first Chief Executive of Somerset Partnership NHS and Social Care Trust (Somerset Partnership). Somerset Partnership was created in April 1999 and is subdivided into four localities. The Joint Commissioning Board following an initial report by the Chief Executive commissioned the day services review.

Representation in user involvement is a key issue (Bowl, 1995). It was found to be the key problem for statutory authorities in one survey of user involvement initiatives (Croft & Beresford, 1990). The original proposal was to have a stakeholders conference for 100 people. Those attending would be given the opportunity to put themselves forward to join a 15 to 20 strong ‘working group’, made up of between a third and a half service users, to develop the issues raised at the stakeholders conference. At the first stakeholders conference roughly 100 people did attend and 8 users (including the author of the report) became members of the ‘working group’. One reason for the number of users being on the low side of the original plan was that all the different interest groups had to be accommodated. Somerset Partnership had 9 members on the group and the voluntary sector 3. There were also representatives from statutory educational, employment and leisure interests. The issue of representation did become an issue at the first meeting of the group when it transpired that two users wanted to join the group. It was decided that as one user was currently using day services it would be more appropriate if he joined than another user who was not using day services.

Format of the review

The format and facilitating of the review was in the hands of Somerset Partnership. After the stakeholders day there was a ‘training day’ and people from outside Somerset came to raise awareness of different ways of thinking of and providing day services. After this, members of the group were encouraged to go outside the county to visit various day service projects. Many of these projects do operate outside the model of existing day services in Somerset, such as one that has self-referrals. Perhaps both the ‘training day’ and the visits outside the county could be seen as involvement that went beyond simply asking users whether they were happy with services currently available. There did seem a sense of looking for alternatives. However, there was no formal opportunity for the users to form their own independent perspective by meeting separately from the rest of the group. Midgley et al (1995) suggests that providing confidential space for users to develop their views independently of professionals can mitigate against the tendency for professional discourses to dominate. It was perhaps ironic that it was the 4 day service managers and the Chief Executive who met outside the group to build on what the group had done. As to the final report and the recommendations made in it, this appeared to be in the hands of the authorities. Though all the participants were given the opportunity to comment on various drafts. As regards the language of the report, the terms ‘user’ and ‘mental illness’ were used uncritically throughout the document. After the deliberations of the ‘working group’ there was a final stakeholders meeting that around 80 people attended. At this meeting the draft report was discussed. There would be one final meeting of the ‘working group’ and then the draft report would be presented to the Joint Commissioning Board before going out for more consultation.

The service users were asked what they thought of their involvement. Three generally saw it as positive and these are their comments:

‘‘It’s good – you could speak your mind’’

‘’I’m quite happy, there has been lots of activity, a lot of investigation and research’’

‘‘It gives clients a chance to express their opinions. And you are given a fair chance to express your opinion’’

The respondent who was ambivalent said:

‘‘I started by being impressed then I missed some of it. I feel a little disappointed now’’

The two who had strongest reservations said:

‘’It was a bit of a fore-gone conclusion – they had a pretty good idea of what they wanted out of it’’

‘‘It didn’t address the central problem of finding meaningful ‘work’ – domination by key providers made it bias. Our presence not entirely tokenistic – but generally it was a revamping of what is already there. Not a question about whether we are rehabilitating people to go back into a sick society’’

No users expressed serious concerns about how it was run, though two mentioned the lack of agendas at meetings. One respondent further raised the problem of representation saying

‘‘I think as a process the bits I was involved with were fairly good. They could have canvassed the views of other people via a questionnaire rather than expect me to be a representative’’

‘‘Actual meetings were conducted professionally and everyone had an opportunity to participate’’

‘The best you could have got – a continuity of people there. Input at (first) stakeholders conference could have been better’’

‘‘It was very good when people came’’

‘’I think it was okay – no problem with transport’’

‘‘I was impressed by the facilitators and the way they knew everyone’s name’’

‘‘There were a small number of users. There should have had a greater range of users to match number of professionals’’

‘‘Should be more focus on integrating services into the mainstream and working with local communities’’

‘‘When you become part of the services you become seen as traditionally mentally ill. They could have moved focus to more preventive work. Alternatives to admission a good point, yet they don’t talk about people before they have a major crisis. Self-education missing, rather than just wait to have major breakdown.’’

‘‘I think other service users are a bit in the dark about the day services review – feedback doesn’t seem to be brilliant. They worry they may be forced to do ‘work things’. Education classes may suit the younger one but the older ones may not want to do them’’

‘‘It would have been better if users and voluntary sector organisations had been invited to a workshop. One of my concerns is they want countywide representation. Shouldn’t be countywide. It replaces one mammoth with another. I would like to see diversity maintained.’’

‘‘I would like the edges to be made ‘fuzzy’, not you’re well, you are discharged. I would prefer raising awareness and stopping people getting unwell. Some people have tendency to knock the system but not offer anything in its place. Same set of faces all the time, perhaps they could step aside to encourage others to come forward.’’

The members of the day services review were given a Likert style questionnaire to complete (see appendix 2 for more details).

All the respondents, strongly agreed with the statement that involving users ‘is in itself a good idea’. 10 out 14 respondents strongly agreed with the statement "Who represents service users is an important issue". Other statements that stated attitudes such as "Service users should have an important role in appointing staff" and "User should be involved in deciding how budgets are spent" seem to be less well supported. The small number of respondents made it difficult to make any real claims for this research yet it does hint that there may be resistance to involving users more, in things such as budgeting and staff recruitment.

The members of the day service review group were also given a general questionnaire about the day services review and user involvement. There were 15 replies. The results are shown in detail in appendix 3. As far as the make-up of the group, 14 out of 15 felt that the statutory services had enough members on the group, 10 out of 14 felt there were enough users on the group, whilst only 5 out 15 felt that the voluntary sector had enough members. As to the question of ‘‘do you think there any barriers to more user involvement’’ the reply "yes some of the current user representatives" suggests that the issue of representation is still to be resolved in Somerset. Finally as a snapshot of the process of user involvement members of the group were asked to choose the one term from Arnstein’s ladder of citizen participation that best summed up the day services review in terms of user involvement (see figure 4 overleaf).

This project has taken an unashamedly critical look at user involvement. It is clear for the literature that there is no blueprint about how to involve service users. Concern over previous attempts to involve users centred on the lack of clarity of terms. Studies also suggest that many initiatives have been at a ‘consumerist’ level and there has been little transfer of power to users. One key issue developed from the review of the literature was the concept of seeing user involvement as a two-way process. Just inviting users on to a committee without considering the relative positions of the groups or without at least acknowledging ideological differences may be seen as a more ‘consumerist approach’ to user involvement.

Whether Somerset is doing better or worse than elsewhere is difficult to say. As regards the day service review as a process of involvement, the majority of the user participants saw it as a fair process and a positive experience. Though the small number of participants makes it difficult to generalise for all service users within Somerset. The day services review may have a significant affect on service users throughout Somerset. So further research may be necessary to find out what those not on the day services review think of the report. Also it would be interesting to know what a larger number of staff think about user involvement. These are perhaps areas to be further explored.