User empowerment 5

Mind's Policy on User Involvement

This policy is an updated version of Mind's 1991 User Involvement Policy. It aims to guide Mind and other mental health services in continuing to develop successful user involvement.

Comments on Mind's 1991 User Involvement Policy

'After telling my psychiatrist I had applied for a job she said, "Go to the interview but refuse the job". I accepted readily my desire to work at teacher level was not to be fulfilled, - until I read your paper. I can now question my doctor's right to say at what level I can function.' [1]

'I would agree very much with the principle which you are trying to promote that decision making about the planning and delivery of services should properly take into account of the views of the users of those services'. [2]

Introduction

Mind believes users should have the opportunity to be involved in decisions about every aspect of mental health services - from their individual care and treatment to local and national policy.

Full user involvement means:

• equal citizenship

• dignity and respect in mental health services

• full information on treatments and rights

• involvement in treatment and care

• independent advocacy in every area

• broad participation of users through equal opportunities employment and service delivery practices

• involvement in planning, running and evaluating services

• policies to ensure it is safe to get involved

• training of workers by users

• practical commitment and resources for user involvement.

Background

In the 1990's user involvement has taken off and the debate is about how, not whether, it should be done.

Professionals and managers have been helped to involve users in a meaningful way: through video, leaflets and training resources produced by user-trainers. [3]

The first user run sanctuary has opened, in Lambeth. The three national user organisations - Mind Link, the UK Advocacy Network and Survivors Speak Out - are regularly consulted by Government and other decision makers.

Some user involvement is still tokenistic: for instance, may be involved in planning an advocacy project, only to find the money switched to something else (without warning or consultation) at the last minute.

There is also still a long way to go in ensuring the voices of different groups are heard. Some people have been so ignored, or are so afraid of speaking out of fear of discrimination, that their needs are missed: for instance, people in long-stay institutions, black people, old people, people whose main language is not English, homeless people, lesbians and gay men, people with physical or learning disabilities. Mind is committed to listening to these and other experiences.

Successful user involvement is a process of development and learning for staff, volunteers and users. Mind, nationally and locally, has been changed by that learning and is committed to continuing to develop.

Users are involved in Mind through formal structures: at least two users must be on the executive committee of each local Mind group; and Mind's national consumer network, Mind Link, is represented on Mind's regional councils and on Council of Management, the ultimate decision making body. Mind Link also elects representatives on to the national Mind Link panel which advises on policy; and users are involved in may working groups and committees. About a quarter of Mind staff define themselves as users.

A note on language

By 'users' we mean people who have themselves used any services (such as in-patient, out-patient or primary care) because they experience, or are thought by others to experience mental distress or 'mental illness'. Relatives and friends are therefore only users if they use services on account of their own distress. Some people reject the term user preferring terms like recipient or survivor. People should be able to define themselves using words which are acceptable to them.

User involvement includes both participation in decision making - about your own care and treatment and/or the mental health services as a whole and consultation, a process whereby decision makers engage open-Mindedly with a broad range of people in order to reach decisions, within a clear agreement about how the outcome will be fed back to those consulted.

A core belief

Users of mental health services have historically been devalued and discriminated against at three levels:

• By society at large. For instance, refusing someone a job solely on the grounds that they have used psychiatric services is still not illegal.
• By the regimes of psychiatric services. In the 1990's a users found people in one hospital had to share toothbrushes and underwear.
• In individual consultations with workers. Four out of five users say that they are not given enough information about the treatments they are prescribed.

We believe that this discrimination needs to be challenged at all three levels, if users are to have more control and choice in their lives.

Equal citizenship

People with diagnosis of mental illness face specific discrimination: it is hard to obtain work, training, a mortgage or even life insurance. A record of using psychiatric services, unlike a criminal record, is with you for life.

Mind is working for equal citizenship rights for all users of mental health services.

Next moves for all groups concerned to promote equal citizenship:

• lobby to make discrimination on mental health grounds illegal

• promote as widely as possible the message that users, like anyone else, should not have their judgement written off. If they report a crime, or a physical illness, they should be taken seriously

• set up mental health awareness training for employers and for front-line workers with the public, such as the police;

• raise public awareness of mental health issues, including through the education system

• work with the media to eradicate stigma.

Changing attitudes in mental health services

Mental health services have often shown the same lack of respect as the rest of society for users. But now many workers are listening to individuals anger about the way they have been treated and are relating to people as individuals.

Mental health services have a particular responsibility to treat users with dignity and respect. These services should set example to the wider society.

Next moves for all mental health service providers:

• avoid seeing people just in terms of their diagnosis

• be aware of all the personal and social factors that influence a person's mental health

• recognise both the common human experience of distress - and that each person's experience is unique

• recognise that for some people an emotional crisis may act as a point of growth

• create a culture in which it is safe for workers to come out as users

• provide a space - such as supervision - for workers to work through their own feelings in relation to work

• offer support to user-workers, eg through a network of people in similar positions in other agencies.

'I must do my job 'professionally' whilst still letting the 'workers' know that I am a representative user (some people still feel that if you can talk clearly you are not a 'patient'). I must though never make my fellow users think that I am 'just another worker'. This is a tightrope' [4].

Knowledge is power

'The first I knew about tardive dyskinesia was when I started to experience the symptoms' [5].

'Some patients will be capable of using much more detailed and specific information than others. The Royal College of Nursing view is that the amount of information given should always err in the patient's favour'. [6]

Information for users should be based on what users want to know.

Next moves for all service providers and information (including Mind)

Make information available to all mental health service users on:

• the different treatment and service options available (including outside the mainstream, eg. Self-help and complementary medicine)

• the risks and benefits of treatments

• users rights, including how to complain, how to access notes, how to refuse to have your name included on a case register [7]

• details of how users can get involved in planning, managing and monitoring the services

• use information compiled by users or with strong user input

• make sure the information is available in different so everyone can understand: for instance, on tape or video for people who cannot read; and in Braille. Where possible information should be given face to face and in a form that people can take away to go over it again.

Involvement in treatment and care

Traditionally professionals have tended to recommend one plan for treatment. If users reject it they are likely to find that nothing else is forthcoming. Worse, their 'non compliance' with the treatment may be seen as a sign that they lack insight - and steps may be taken to persuade or coerce them into taking a treatment that they do not want. A more helpful model is for professionals to use their knowledge to advise on options and then to help the user decide what treatment he or she wants. Often the users preference can be met even within current resources - for instance, low doses of major tranquillizers with self-help support rather than high doses.

Next moves for all service providers

Offer users the chance to be involved in:

• deciding who their key worker or psychiatrist will be

• drawing up their care plan

• making changes in treatment, for instance by offering users support to withdraw from medication if they wish

• ensure staff are trained on the Mental Health Act Code of Practice; including its provisions on information and consent to treatment.

Purchasers of mental health services:

• make more service options available, in line with users' demands: for instance, more services based in ordinary settings like community centres and colleges;

• use individual contracts - since not all users will be happy with the service provided to everyone through a 'block contract'.

Adovocacy

Independent advocacy helps people obtain information, assert their rights, and exercise choice.[8]

Next moves for Government and purchasers of mental health services:

• resource independent advocacy in every area

• resource legal advocacy, to ensure it is available (as a minimum) for all users detained under the Mental Health Act 1983.

Broad participation through equal opportunities

An equal opportunities policy is a tool to involve all sectors of the community - as workers and as users.

Next moves for all service providers (including Mind):

• ensure that recruitment of staff, volunteers and advocates is free of discrimination on grounds of psychiatric history as well as more familiar grounds like race, gender, sexual orientation and disability [9]

• ensure that publicity images and literature are acceptable to all potential users; and that the services are relevant to different groups' needs

• make sure users involvement means different groups can get involved. For instance, local and national Mind should make links with black organisations, women's organisations etc to ensure their voices are heard.

Involvement in all stages of planning, running and evaluating services

'A users has a right to receive attention as he/she needs it without being made to feel obliged to take part in committees, policy making etc.' [11]

Users can be put off from getting actively involved in planning or management if they feel they may be penalised as a result.

Next moves for all service providers (including Mind):

• ensure active users are not penalised, either by being labelled 'trouble makers' or by being denied support. Users often need more, not less, support when they get involved on committees
  
• never invalidate the views of an active user by saying they are 'unrepresentative', once they become powerful and articulate, or to find a voice and be told they are not typical users
  
• consider resourcing a self advocacy group or user 'quality' group, so that individual users speaking out do have a constituency and a support network
  
• have a well-publicised complaints procedure. Users should be able to complain irrespective of their circumstances and be able to have an advocate to assist them.

Training of workers by users

Training by users is growing rapidly in the UK. It can enable workers to understand more about the implications for users of their actions, their treatments, their approaches.

Next moves for training bodies:

• seek users into all basic professional training and post-qualifying training, eg. of psychiatrists, social workers, nurses

• ensure this training is well integrated into the rest of the training course (not just a 'one-off') and properly funded

• aim for trainers from a range of perspectives - for instance, include trainers on black users' issues and women's issues.

Service providers (including Mind):

• build user training into in-service training programmes for workers.

Practical commitment to involving users

'Secretarial and administrative back up take years to acquire…tea and sympathy are not as effective in fostering user involvement as established funding, office space, adequate equipment and core costs.' [12]

Next moves for providers and purchasers of mental health services:

• cost users involvement realistically, including phone calls, photocopying and stationery

• ensure parity between users and non-users: if a professional consultant or trainer is offered a fee, the same must apply to a user trainer or consultant

• offer training for users, eg. in committee skills

• acknowledge users contributions. Credit for users' ideas and work should go to them, not to professionals.

This policy is based on an earlier policy produced in 1991. It has been revised in the light of feedback from Mind Link members; Mind regional councils; others within and outside of Mind; and with the active input of representatives from Mind Link, UK Advocacy Network and Survivors Speak Out. It was written by Liz Sayce.

Copyright Mind, Granta House, 15-19 Broadway, London, E15 4BQ. (1993)

[1] A Mind Link member (1991)

[2] Sir Duncan Nichol, Chief Executive, NHS Management Executive (1991).

[3] From Anger to Action (1992). Mental Health Media Council; People First:The Right to Know leaflets (1991). Mind; Training and User Involvement in Mental Health Services (1992). NHS Training Directorate.

[4] A development worker for a user group.

[5] A user of Mind's Information service.

[6] Letter to the RCN to Mind (1991).

[7] See Mind's Policy on Case Registers.

[8] See The Mind guide to advocacy in mental health (1992). Mind.

[9] See also Mind's Policies on Women and on Black and Minority Ethnic People.

[10] Letter from a Mind Link member (1993).

[11] Jan Wallcraft in: 'Training and User Involvement in Mental Health Services' (1992). NHS Training Directorate

[12] Edna Conlan, ibid.

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