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Help Sheet

Forming a group

This help sheet describes general categories of consumer groups:

These are examples of the different types of groups consumers form as people come together to improve their quality of life and the quality of life of other consumers.

It's a useful list, but remember it is only a tool. In real life many groups take in aspects of some or all five categories and others change through time to become more like a different category of group. For example, a local art group might most of the time be a group that doesn't want anything to do with 'mental illness' but may include a sub-group that has met regularly to plan and host an arts event in Mental Health Week.

Local Groups

People who have common interests, experiences and goals benefit in a variety of ways from meeting with other people with a similar agenda.

Quite often they come together following their instincts that these other people have also been through a tough time. The meetings begin very informally and by mutual consent in places considered 'safe' by members of the group.

Many people want to be as far away from mental health services as possible and they want to have relationships with each other that are person-to-person and not patient-to-patient.

Slowly people start to realise there is a pattern to their meetings and that there is 'groupness' to the way they are relating to each other.

These sorts of spontaneous groups are often based around geographic locations where each member is familiar with a similar set of local issues.

Meeting places

Groups can meet in all sorts of places and ways - conversations in a coffee shop, a park, or in someone's own living room are often the starting point.

There are many local places that don't require payment. Local council offices sometimes have free meeting spaces for community groups; local libraries can also have free meeting spaces and the added benefit of computer access if the group needs it, plus other library resources that group members might want to access before or after the group meeting.

Some local neighbourhood houses have spaces where groups can meet, and many of these have the added benefit of having supervised children's play areas, enabling parents to attend meetings without the added cost of child care.

Access to local transport is another important consideration when the group is deciding where to meet.

Some groups want to meet away from mental health services or Psychiatric Disability Rehabilitation Services (PDRS). There are good reasons for doing this. Some consumers are wary of having their lives controlled or restricted by the fears of others. Many groups report that it is also about establishing themselves as an independent group that does not have to rely on the goodwill of services. (See Sylvia Caras - here - for a good discussion of these sorts of feelings.)

When you are freed from the feelings of being controlled or forever grateful there is space for groups to move forward with the agenda that is actually most important to them.

What are you going to talk about?

Initial discussions within a newly formed group may be free flowing, and may follow no particular agenda, purpose or expected outcome. No notes or records of discussions need to be kept.

In the initial stages groups may be 'informal' and come together naturally by word of mouth. The first six months or so will be a time of finding out about each other, what you want out of the group and whether people do really want to keep meeting, and if so why, where, when and how.

The discussions may begin by being focused on people's personal experiences relating to some particular aspect of their lives, and progress to discussions of what would be a better alternative.

People attending the group may talk to other people about these meetings. The original group members may wish to expand the membership by inviting more people to attend.

Attendance at the group is dependent on people's availability and the group make-up may change from meeting to meeting. People may attend for a period of time and then not attend, or may be regular attendees.

This is the same for any community group but in the area of mental health, groups need to take the real ups and downs of people's lives seriously in every aspect of the initial stages of planning the group.

Specific Issue/Interest Groups

Sometimes groups are formed between people with a shared interest such as a 'Line-Dancing Group', or over a specific issue such as a 'No Forced Treatment Group'.

Members might be drawn from local services, or they might come from all parts of Victoria, or from a particular cluster of suburbs or a particular regional centre. These groups can spin off from a local consumer group as people get talking and realise they share interests and/or ideas.

Sometimes these groups really need dynamic leadership during the formation stage and some perseverance and hard work to get them off the ground. They tend to be less casual in the way they attract members because they are coming together around an issue or interest that is already known. Some groups in this category rely heavily on a variety of advertising methods to 'get the word out'.

Illness-Specific Support Groups

For Illness-Specific Support Groups, participation comes about through self-identification with a specific 'illness'.

Some people come together because they want to know more about their 'illness', diagnosis, treatment and prognosis, others because they want to spend time with people who share similar experiences.

These groups sometimes appeal to people who have thought about the issues and find the 'medical model' acceptable.

Sometimes these groups are backed by wealthier non-consumer lobby groups and are therefore more resourced and more easily located, either on the internet or by phone.

Organisations that might be useful for people wanting to establish illness- specific groups include:

Frequently people come together to hear from medical personnel and to have an opportunity to ask questions. If your aim is to attract such people the group may want to enlist the assistance of some of the above organisations.

Remember that there might be a group already established that is interested in your particular 'illness' or spectrum of 'illnesses'.

Even if this is a local group that is not in your area you might want to contact them and ask some basic questions such as:

It's important to know that Illness-Specific Support Groups don't have to be connected to a larger, overarching organisation. You might instead start by finding a space - a local library, community house, public health centre or someone's home - in which interested people can meet and determine what they would like to get out of the group.

Short Term and/or Specific Purpose Groups

These groups have a different purpose than ongoing groups. They may be related to a larger project - such as finding out what a wider group of consumers thinks about a specific issue, writing parts of a report, or planning for a specific event.

Such groups usually won't 'emerge' in the same way as other groups, because they are formed around a task rather than gradually growing from one or two people. Some examples are:

  1. A sub-group of a larger CDI.
    For example, the gay and lesbian members of a consumer organisation may seek a safe place to discuss issues specific to their sexuality with the intention of writing a policy for the organisation.

  2. A working group
    For example, a consumer employee establishes a consumer group to help develop training modules for the organisation.

  3. A reference group
    For example, a consumer researcher is investigating peer support models and establishes a consumer reference group to provide intensive commentary on all aspects of the research.

Groups that Want Nothing to do with 'Mental Illness'

Many of those diagnosed with 'mental illness' meet other people diagnosed with 'mental illness' and become friends. This is partly because we are often drawn to people we almost subconsciously recognise as 'like us'.

If friendships are formed people often feel very relieved that they have actually found someone they can talk to who 'gets it', is non-judgmental, and who can talk about the darker side of 'mental illness' without freaking out.

Sometimes others with similar experiences join in too and a group may form.

These groups provide a place where people can truly be themselves, rather than putting on a 'well act' all the time.

It's important to note, however, that often the last thing people want in coming together is the formation of a 'mental health group'. People diagnosed with 'mental illness' have many other aspects to their lives - some are great at sport or singing, others are interested in parenting, or learning about food, or reading books.

Sometimes people just want to hang out with 'safe people' and do things totally unrelated to mental health.

These are often groups that ebb and flow as people do their own thing, but there is still a supportive 'groupness' that people associated with the group appreciate.

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