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Help Sheet

Why do we want to start groups of our own?

People who have experienced 'mental illness', and the mental health system, have a long and proud tradition of forming their own groups, whether these be leisure, support groups, service provision, or advocacy groups, in recognition that there are some things you can't know unless you've been through them yourself.

It is this special knowledge that groups draw on and the members of the group share together. Often these experiences also provide the motivation for a group to form in the first place.

Traditional groups

Traditionally many groups and activities that we are involved in have been designed and structured by mental health workers out of some of their ideas about what will be of benefit for consumers. However, the therapeutic intent of these groups is often the reason some consumers say they don't get anything out of them. Many of these services would describe themselves as being 'client-centered', 'promoting empowerment' and 'for the benefit of consumers', but some questions to consider are:

Consumer-developed groups

A lot of groups start because of the passion of an individual who wants to do something about what they have personally experienced, wanting things to change so that other people don't have to have the same experiences.

When consumers decide to form their own groups, they are often looking to provide something that is not already out there. For example, many people have experienced what it's like to be feeling lonely and desperate during a long evening. A group might be set up to provide a way for people to share and manage those experiences - through an out-of-hours mutual support phone line, for example.


Karla tried to get help when she knew she needed it. But she didn't know where to start. It took her a couple of hours on the phone, trying to call her local council, the community health centre, waiting for people to call back, going through the phone book, before she finally found someone who could help. It made her annoyed and stressed to have to work so hard to find the help she needed.

A few days later, Karla realised that she had learned a lot about what was available in her local community and what was not. She now had a very useful bank of knowledge. She realised there must be other people in similar situations who needed this knowledge too.

Over the next few weeks, Karla talked to a handful of people who had had similar experiences of frustrated attempts to find help. They decided to meet up at Karla's house so people could share their knowledge about places you could go for help.

By the end of the meeting, they decided the purpose of their group was to create a basic directory of what useful services existed in their community, and to distribute it around their community.

The person who seeks to make changes on their own can become frustrated when they hit brick walls. A group can have greater influence. There is strength in numbers.

The group may spend its time together discussing the issues and deciding what actions need to be taken. Participants might decide how best to put their ideas and actions into practice. Finally, they may reflect and look at what has worked and what didn't work, taking on an evaluative role as well.

All people have gathered valuable information and knowledge from their own experiences. Whenever people meet there is the opportunity to exchange this experiential knowledge.


Karl is sick and tired of people like him being described in the print media as "dangerous" and "violent". He has been writing letters to the newspaper each time they do a "crazed gunman" story, but he notices no change to the way the articles are written and his letters are never published.

His opinions have attracted a lot of support, however, from the staff and participants at the day program he attends. People begin to share stories about the impact prejudice has had on their lives. A small group starts to meet regularly, to figure out how they can best bring about a change to these stereotyped attitudes.

Another big reason for starting a group is for support. If the people involved in the group have had similar experiences, they know they will be understood, and know they will not be judged. Such groups are often described as mutual self-help or peer support groups.

Sometimes groups start because there is a smaller sub-group of consumers who feel that they want to share stories and activities with other people who make up this sub-group. These might be groups for young people; groups of people who share ethnicity; groups who are HIV positive; transgender groups; groups of people who identify as both consumers and mental health workers; and so on.

Often the more marginalised a sub-group is the more impetus there is to try and get together - initially perhaps to share stories around their experiences of being a minority, even within the broader consumer movement.

Other groups form for reasons of shared interests - a group of people who want to come down to the city together from a regional centre to go to the footy in the winter, for example, or a group of people keen to form a book club where they can talk about things other than mental health!

The Purpose of a Consumer Developed Initiative (CDI)

The purpose of a CDI is to engage in activities and provide experiences that will benefit its members.

In mental health, CDI groups may have very different agendas. What does remain constant is that individual members need to decide what will and what won't be of benefit both to the group as a whole and to the individuals within the group. Towards this end, the group members decide the structure, focus, purpose and activities of the group.

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