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Developing a User
Voice - Involvement

Contents

What are the reasons for user involvement?
Why users would wish to influence services?
What are the problems in involving users effectively?
Barriers specific to people with mental health problems
Barriers caused by having mental health problems

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What are the reasons for user involvement?

There are three main reasons for user involvement:

1. Legislation and Policy

At all levels legislation and policy documents call for the need for users to be involved in the planning, the delivery of services and in receiving care.

2. Involvement of Stakeholders

Users are the main reason for the existence of services and, as such, are the people who will be most affected by any changes to the care that they receive. It is therefore very important that they have a say in what happens to services.

3. Expertise

Through their experiences of life with a mental health problem users gain an experience of services (and gaps in services) and care that cannot be found elsewhere. This experience is vital in the development of appropriate services.

Why users would wish to influence services

Many users are very happy with the idea of user involvement. The main reasons for this are:

1. To be able to give something back to the service providers involved with people with mental health problems.

2. To be able to help other people receiving services to have a better experience than they have had.

3. To be able to contribute to a movement that is dedicated to removing discrimination and abuse of users in the community.

What are the problems in involving users effectively?

There are a number of barriers that make user involvement difficult. If these barriers can be removed, or adapted, then user involvement becomes easier:

The planning process and involving new people:

There are a number of barriers that would confront anyone showing a willingness to participate for the first time:

Language
Despite the best efforts of all agencies the language used in written and verbal form is often alien to people new to the process and may make it very hard to understand what is happening in meetings or to get to the true meaning of documents.

Familiarity
Most professional workers will meet each other regularly. It is likely that a new person will feel like an outsider in an alien world at first.

Concepts
It often takes time to gain an understanding of the philosophies of care and service deliver, which are the bread and butter of the day to day work of professionals. Not knowing these concepts, or disagreeing with them, may make a person feel very awkward.

Participation
For many people speaking in groups, sitting round boardroom tables and coming to terms with meetings with agendas and minutes can be an intimidating process.

Solutions

1. Use plain English, avoid abbreviations and steer clear of unnecessary convoluted arguments.

2. Explain new concepts, welcome debate from people new to the ideas being used and don't ignore what appears to be embarrassing opinions - follow them up at appropriate moments.

3. Provide short, easy to understand, material about the major concepts and philosophies people will be discussing.

4. Welcome new people - don't exclude them for the sake of comfort. If necessary change to a less formal style of meeting.


Barriers specific to people with mental health problems

Attitudes
The stigma that affects people with mental health problems does not only come from the general public - it can also be found amongst professionals. It manifests itself in antagonistic attitudes to users, whether it be to those involved in planning or those attempting to take a more assertive role in their own care.

Antagonism
Within the user movement and amongst professionals there has often been an unspoken adoption of a "them and us" attitude. From a professional's point of view this may manifest itself in the belief that the only users who get involved in speaking out are those who have a grudge against services or professionals, and that for this reason their views should be discounted.

Changed Roles
It is possible for users to get involved in planning services with professionals who are also directly involved in their care. The switch in roles from the person treating someone and the person receiving treatment to one in which different aspects of people come out can cause some awkwardness and defensiveness on both sides.

Agendas
Whilst, on the face of it, both professionals and users have the same agenda of improving services there are often large differences in approach.

For users there is often a huge emotional investment in the issues being discussed and also an ability to see what would help that is not restricted by budgets or geographical or agency boundaries. This can lead to some professionals coming to the belief that users are needlessly idealistic or optimistic, or alternatively naive when it comes to navigating the system with which they are faced. It can also cause users to become impatient with the pace of change or to lose hope that things will change.

Representativeness
A common complaint about user involvement is that the users concerned are not representative. A glib answer to this is that professionals are themselves very rarely truly representative! A small group of users can, whether they are representative or not, provide very valuable insights into services and lessons for future practice. Many user groups, if not representing all interests, will attempt to convey the wide range of issues of which they are aware. Their power to do this increases with the number in the group, the degree of democracy within the group and its communication amongst its numbers.

There are also some user groups which will campaign to a specific agenda and make no attempt to convey differing views. This can also be highly useful if their agenda is explicit.

It should be born in mind that the major political parties do not represent the entire population and likewise a self-advocacy group will have difficulty representing or even finding out all views.

Power
Both working with planners and in receiving care there is an imbalance in power that can lead to antagonism.

From a users point of view professionals can often be perceived as the possessors of resources and solutions, the controllers of committees and the gateways to services. This power imbalance extends to the fact that all professionals are receiving a wage and can walk away at the end of the day, whilst many users are in the opposite situation. This can lead to resentment and an inequality in participation that will discourage users from staying involved.

Finances
A large number of users are in receipt of benefits and unemployed. Involvement can be discouraged because some users cannot afford to travel to meetings or to pay for meals when away from home.

Commitments
For those users who are working or have children to look after it can be impossible to become involved in planning decisions because of those commitments.


Results

Users will in the main get involved in order to improve life for other users and in general will do this for nothing except the knowledge that they are making a difference. If they do not get feedback about improvements, change seems unlikely or they feel that they are just there for the sake of it then it is likely that they will drift away from the process.

Solutions

Professionals should go through some form of mental health awareness training
Getting over antagonistic attitudes requires time, a willingness to listen and a willingness to suspend judgement from both sides.

If changes does not occur it would be wise to examine the commitment that there is to user involvement. Where specific things are requested, and will not be provided or will take a long time to develop, the reasons should be explained.

One way of addressing power imbalances is to give power to users - for instance by users running their own services. Power is sometimes unavoidable and can sometimes not be relinquished without damaging people. However, communication and humanity can start to redress the balance. In planning it is often useful for professionals to come to user run meetings where at least some of the elements of power are shared.

No user should lose out when they choose to get involved. Subsistence and travel expenses should be paid and consideration should be given to some form of payment when their involvement crosses the boundary between volunteering or activism and work.

Where users can't get to meetings then either other users should bring their views forward or people should go to meet them, out of hours if need be.

Barriers caused by having mental health problems

Having a mental illness, or being treated for it, may make user involvement difficult:

Confidence
Many people with mental health problems can through the trauma of mental illness, the pain of stigma or the hopelessness of unemployment have very low feelings of self worth or confidence.

This may make it very hard for them to participate in meetings or to believe that there is any value in what they are saying, especially if they are surrounded by people who appear to be confident and well aware of all the issues being discussed.

Concentration
Medication and illness may both conspire to make it hard to concentrate. This can make long meetings hard to cope with and can make complex arguments and jargon hard to put up with.

Times of meetings
Many users, because of medication which makes them lethargic in the morning or illness which keeps them up at night, may find it hard to attend early meetings.

Reading
Some medication causes blurred vision - this can make it hard to read literature. The same also applies to people who have difficulty concentrating.

Continuity
Periods of hospitalisation or illness can make it impossible for an individual to continue their presence at meetings or to participate in them.

Illness
In the main users would voluntarily absent themselves from involvement when acutely ill and would rely on other users to take their place or professionals to look after them.

However, some users may continue their involvement whilst being ill. A number of barriers can then arise such as:

People who are psychotic or paranoid may find it very hard to associate with people or to participate in any meaningful way.

People may get panic attacks if they feel themselves to be in an antagonistic or alien environment. People who are depressed may lose all confidence in their ability to participate (see Confidence heading).

Solutions

In organisations like the Highland Users Group it is well established that if a representative is unwell then another member will take their place in meetings. An effort is always made to ensure that a user does not attend meetings on their own but has support.

Meetings are kept as informal as possible and members strive to make them as safe and secure and as tolerant of different feelings, experiences and emotions as possible. The use of groundrules, while potentially being used to exclude people who are ill, are mainly used to provide security for all members.

Attempts are always made to communicate in plain English.

Where a member is not well enough to communicate with professionals they are encouraged to participate in other ways until they are well enough for a greater level of involvement.

Where a member's illness does not interfere with the HUG groundrules people would be expected to adapt to the problems that the person is facing

 

 


Highland Users Group
Tel: (01463 723560) — Email: hug@hccf.org.uk

 

 

 

 

Developing a User Voice - Involvement