Lungnet

Getting Started - Setting up a Patient Support Group

The LungNet™ can provide information and advice on setting up a patient support group, having harnessed this advice from a number of established groups across Australia.
There are several ways patient support groups "originate" including:

through the motivation and enthusiasm of a patient or carer who sees a need
from a community health setting, where health professionals have identified a need
as an extension of hospital based pulmonary rehabilitation programs, to ensure that program participants receive ongoing support.

Guidelines for Support Group Start-Up - Community Setting

• Make contact with key health workers in the local area/community to investigate the level of support and the "need" to establish a support group.
• Hold a meeting to discuss interest in establishing a support group, resources available and level of co-operation which could be achieved between local health agencies.
• Make contact with LungNet™ State Co-ordinator and Australian Lung Foundation National Secretariat to advise them of your intention establish a patient support group, and discuss areas where the LungNet™ can offer support.
• Establish a venue for a pilot "interest" meeting for a new support group.
• Promote pilot meeting - formally & informally.
• Hold a pilot meeting to gauge level of interest. This should feature an interesting guest speaker to give attendees a taste of what a patient support group can offer. At the meeting, establish some guidelines for the group's future activities - frequency of meetings, possible guest speakers, objectives the group would like to pursue.
• Commence promotion to expand group membership. Distribute LungNet™ Quality of Life brochures, group promotional flyers etc.
• Use the community media to profile the group. Network with other community organisations, health agencies and health professionals to gain referrals to the group.
• Maintain contact with LungNet™ State Co-ordinator and The Australian Lung Foundation National Secretariat for on going assistance.

Guidelines for Support Group Start-Up - Extension of Pulmonary Rehabilitation Program

• A few key decisions should be made about the nature of your support group. Most groups affiliated with LungNet™ are similar to model ii). There are a few very successful groups run as per model i) e.g.. Royal North Shore Step Out rehabilitation and support)
• Is the group to be an extension of your rehabilitation programme, exclusively for patients who have undergone rehabilitation? Will the hospital have close ties with the group in terms of administration?
• Is the group to be "community based" with membership open to all patients, administration conducted by the group themselves after the initial set up phase, and expert assistance when necessary. Consult with key health professionals and other relevant agencies in your area.
• Conduct needs analysis/survey of rehabilitation patients to investigate level of interest and support in establishing a patient support group.
• Make contact with LungNet™ State Co-ordinator and ALF National Secretariat to advise them of your intention to establish a patient support group, and discuss areas where the LungNet™ can offer support.
• Establish a venue for a pilot meeting.
• Promote the pilot meeting - formally and informally.
• Hold a pilot meeting to establish committee members, and the protocol for the meetings. Establish future meeting dates, possible guest speakers, available resources etc.
• Commence promotion to expand group membership. Distribute LungNet™ Quality of Life brochures and promotional flyers etc.
• Use community media to profile the group. Network with other community organisations, health agencies and health professionals to gain referrals to the group.
• Maintain contact with LungNet™ State Co-ordinator and ALF National Secretariat for on going assistance.

A comprehensive Patient Support Group Start-up Manual is available from The Australian Lung Foundation by calling 1800 654 301. The manual is available for patients and health professionals. It gives an overview of LungNet as well as tips and tools for setting up a patient support group.

Content updated March 10, 2008