Ensuring that consumers, carers and families are well supported is vital to ensure that they are offered every opportunity to enjoy the best possible quality of life.
Consumer support groups can assist carers and families managing complex health conditions. They can provide emotional and personal support by connecting individuals to others who have faced similar challenges and experiences. Some of the most practical and innovative advice families receive can come from other families who have “walked in their shoes” and developed their own management strategies.
Some individuals and families not linked into a supportive network or community of this kind may feel isolated and may miss out on health services, leading to poorer health outcomes.
Consumer support groups may play a key role in advocating for the rights of consumers and carers. An organised consumer group can play a powerful role in ensuring that the collective needs of a group are effectively communicated to health and social service providers and that their voice is heard in decision-making and planning processes.
Consumer groups are built around the needs of a group of people who share a common interest. Individuals may choose to join an existing support group, or if a specific need is not being addressed, they may look to set up a new group.
There are many organisations that can assist with setting up a support group and assist with advocacy. Often a range of backgrounds and skill sets are represented within consumer groups, and tapping into those resources is very useful. There are also likely to be many people within the wider community willing to support the group by offering assistance or access to resources. A child’s school, for example, may be able to offer a venue for meetings or social gatherings.
Depending on the numbers involved it may be worthwhile establishing a committee, with office bearers and a constitution with clear goals and guidelines for how the group will function. This may include committee structures, meeting schedules, voting rights etc. Formal annual general meetings (AGMs), in which the committee reports to group members and receives input on future directions, can also be a valuable way of keeping everyone involved and ensuring the group continues to develop and evolve.
The group may wish to register as a charity or not-for-profit organisation – the Australian Tax Office (ATO – link below) can provide information about what is required in this regard. There may also be insurances required for operation as a non-profit organisation so it’s worth seeking advice about what insurance cover may be needed.
Any consumer group setting themselves up from scratch will benefit greatly from seeking advice from other organisations that have followed a similar path. It may be worth forming a sub-committee under a larger organisation’s banner, with their permission, so that insurances, tax-obligations etc. can be shared.
Organising community activities may be a core function of some consumer groups. Events can be both formal and informal, and may play a significant support role. In a relaxed and friendly context, a single forum can provide many things at once – opportunities for questions and advice, tips and hints, personal stories and experiences, networking and forming personal connections.
There are many ways to share information and to invite people to community events and activities. Some examples include:
- Websites can be used to disseminate information relatively cheaply and quickly and can provide interactive resources. Websites can be easily kept up-to-date and made accessible to a wide audience – carers and consumers, clinicians and the general public. They are a great vehicle for sharing stories, celebrating milestones and obtaining input and feedback from community members via online forums.
- Facebook pages are a popular means of creating online forums and of promoting events, managed by an account administrator.
- Newsletters, brochures, noticeboards and electronic mailing lists (i.e. group emails) are other valuable mechanisms for providing information to those connected to the group.
- Where appropriate, local media can often be used to promote community events- sometimes free of charge.
The ways in which a consumer support group works with a health service will vary. Mutual advantages to these collaborations may include:
- An active consumer group is well positioned to advocate for health services that remain focused on meeting the group’s needs.
- Distribution of information and requests for feedback can be facilitated through the consumer group’s established mechanisms (newsletters, website forums, etc).
- An organised group can independently review a service development project and represent the views of the group to the health service.
- Actively involved members may represent the group on health service boards or steering committees.
- Consumer support groups can share their understanding of their clients’ lived experience with professionals and build rapport in non-clinical settings.
- Through a range of complementary and integrated services, consumer support groups and health services work together to provide comprehensive care to ensure the physical and psychosocial needs of clients and carers are met.
There are many ways in which professionals and health services can support consumer groups.
Examples may include:
- Introducing individuals with common interests (e.g. patients treated for the same or similar conditions) who may potentially form a support group. Care must be taken to ensure confidentiality is maintained until permission has been obtained from all parties.
- Referring new patients or clients to an established group.
- Providing in-kind support, such as venues for meetings or social events, access to tea and coffee facilities, phones and photocopiers.
- Co-ordinating access to facilities and resources, such as one-off group child-care when a meeting is taking place, or online medical journals.
- Assisting with funding by making application for suitable grants (e.g. for joint projects such as seminars).
- Organising or co-ordinating small-group clinic-based events such as coffee mornings, education evenings etc.
- Offering to speak and securing other speakers (e.g. specialist clinicians) for information sessions and seminars.
- Supplying information updates (if requested) by the group and in the format they prefer, for circulation to members (e.g. a column in a regular newsletter).
- Attending and actively participating in events the group organises.
- Working together to create larger events for mutual learning and development (e.g. conferences).
- Raising awareness about the consumer group and your experience of working with them, within the health system.