User empowerment 4

Overview of Mind's Policy on User Involvement

Mind Link Listening Day - 19.6.2000

Nowadays, it is unthinkable to attempt to develop mental health policy and practice without provision for including the view of users of mental health service – as a right.

Planners and service providers in both the statutory and voluntary sectors now routinely expect to consult service users, even if some of that consultation is only on the surface.

User participation

When Mind began its work in relation to user involvement, it was one of a very few voices raised in advocating the need to involve service users.

"It was not until 1986 that a formal psychiatric system survivor movement began to take shape locally and nationally. In that year, Survivors Speak Out started with a nation-wide membership and the Patients' Council movement began in Nottingham. Both moves were assisted by mental health workers but led by people who have received mental health services. Since 1986 there has been an enormous increase in activities by service users individually and in groups." [9]

One of the main outcomes of increased expectations for user involvement was that users of the service were in demand to participate in planning forums, take part in committees, attend meetings, respond to consultation documents and generally present the ‘user' view.

Often this work was undertaken with little or no training given to users, no clear brief as to their roles, little thought to payment for their services and an expectation that one user on a panel or committee could speak for all users.

Viv Lindow and Peter Campbell wrote about this in their book - Changing Practice, Mental Health Nursing and User Empowerment." (Mind/RCN 1997). In it Viv wrote:

At my first experience of user involvement, I arrived at the meeting

exactly on time, and there was only one place left at the table. This was next to the consultant psychiatrist who had given me ECT, I didn't say anything for several meetings. The second group I joined involved travelling to London. I was very poor and lacking in confidence and wondered whether I could go, even wearing my best sweater. When I got there, among the group were three Professors, two Lords, a Bishop and me, the only service user. I got going at the end of the third meeting, but never felt confident enough to say what a disadvantage I was trying to work under.

Viv Lindow [10]

User Empowerment

The ideal and the reality of user involvement were frequently at odds - rising expectations among users and survivors, an inability of many organisations to understand user involvement and token implementation of user consultation - has led - in many instances - to a climate of frustration, mistrust and a questioning of the basis of its foundation.

It soon became clear that integral to involving users was the need to ensure that involvement was real and meaningful. This gave rise to the promotion of user empowerment as a means of "giving effective power to users which achieves real changes." [11]

"Empowerment refers to the desire to help people gain control over

their lives - not just as people who receive mental health services but as citizens of a wider society. It also recognises the powerlessness that often confronts people who use services - powerlessness in relation to their distress, in relation to mental health services and to society that discriminates against them because of their distress and their use of mental health services." [12]

User Involvement in Mind

Mind was at the forefront of moves to take seriously both the ideal and the reality of user involvement and empowerment. Key to this was the establishment of Mind Link.

In an effort to demonstrate the importance of valuing the experience and expertise of users of mental health services, the Mind Link model was developed. This model included representation of Mind Link members on Mind committees and decision-making structures.

Mind Link is now core activity within Mind.

Changing Realities

However, I think it fair to say that Mind and Mind Link represent only one of the voices currently heard in the user movement. A number of organisations and groups now represent, promote and campaign for the interests of users of mental health services.

It is also fair to say that Mind Link, rightly, will not allow the rest of Mind to become complacent. In the past year, we have been undergoing a re-examination of and renewed debate about the effectiveness of user involvement in Mind - from an organisational as well as a user perspective.

In organisational terms, it is important for Mind to assess whether what is now in place continues to be workable. A number of issues are relevant in this context, including:

• The current exploration within the user movement, which looks at the role and effectiveness of user involvement in the wider mental health user movement

• Critical questioning from within Mind Link about reconciling the expectations for outcomes from users of mental health services with organisational processes about how to facilitate them and

• The need to examine the extent to which a "user-blind" approach operates within Mind and the implications for policy and practice

Organisational Audit

There are a number of strands under way within Mind which examine user involvement – these include a dialogue on the rights, responsibilities and practicalities of user involvement. It is being led by Mind Link.

Another piece of work, which we have just completed in part, is an organisational audit of user involvement in Mind. It was undertaken in January, and was designed to find out what the status quo was or is, and how it can be improved.

We asked staff about their approach to user involvement, as well as their understanding, attitudes and expectations. The survey provided a wealth of very useful information.

1) Extent of user involvement (Paragraph 4.1, p.3)

The audit revealed wide-ranging user involvement in Mind – from participation on staff selection panels to working on the Infoline, involvement in consultation on policy, press work and national advisory panels.

2) Support (Paragraphs 4.2 – pp. 3 – 6)

Staff expected to provide a range of support to users involved in Mind's work. This included asking people what they needed or wanted; discussing the work and debriefing; not making unreasonable demands; setting realistic time scales; and striving for mutual respect.

Staff did not expect to provide counselling; however many were prepared to provide some emotional support. Some respondents indicated that they would not support unacceptable behaviour or attitudes, e.g. contravention of equal opportunities and racist, sexist or homophobic behaviour. One department was also clear, e.g. that they would challenge unrealistic demands or expectations that service users might have.

On the question of what might be useful/practical support to aid user involvement, amongst the responses were: that it was important to allow extra time for meetings; to be considerate about the need for people to take breaks; to have an awareness about where meetings are held and what care arrangements may need to be in place.

Two respondents had role descriptions for service users, while others were in development.

3) Expectations (Paragraph 4.3, p.7)

Particular attention is drawn to this area because of the converse expectations from the point of view of service users. A key strand is that staff expect users to treat people with respect; and it is equally true to say that the view from many users is that they expect the same.

4) Understanding of user involvement (Paragraph 4.4, p. 8)

Most respondents felt there was an understanding of user involvement amongst staff. However, responses were often qualified. Responses indicated a need for additional training in understanding user involvement in order to promote a better understanding of best practice; and increase confidence about how to incorporate it.

5) Difficulties and frustrations (Paragraph 4.5, pp 8-9)

These included feelings of a lack of respect, recognition and gratitude. In addition, respondents indicated that a lack of clarity about what is expected of users sometimes led to feelings of failure.

Other frustrations included the lack of resources for user and staff training on user involvement; failure to meet deadlines; and the lack of a clear protocol for meeting expenses.

6)Ideals (Paragraph 4.6, pp. 9-10)

A range of responses were received. These included the more broad need for mutual respect and understanding; as well as more specific and practical points. Some of the latter included: the need to ensure an influential user voice in all policy making and lobbying; more opportunities to enter into honest dialogues (e.g. lunchtime seminars on the practicalities of user involvement); more user-friendly methods of paying expenses; training on user involvement; a budget for user consultants to attend meetings.

Conclusion

A number of themes emerged from the audit. These included:

• the need for more clarity about what is expected of users

• the need for greater mutual understanding and respect

• the need for more training for everyone about what is meant by user involvement in Mind

• the need for working protocols and policies to implement user involvement uniformly, with particular attention to expenses; role descriptions and support available

• the need for quality and consistency in user involvement across the organisation.

This, and other work currently underway within Mind will inform the development of user involvement in Mind and help shape and re-shape policy and practice so that the term "user involvement" has meaning, is realistic, and most importantly - has relevance for mental health service users.