How to organise a support group?

[Ernie]

I would like to organise a French support group for the Montreal area. How do we go about organising a group?

What I would like to organise is a group that meets every week or twice a month or once a month whichever people prefer. How do we get patients' names?

I was thinking of calling the Montreal specialists and telling them about my idea but before I start I would like to know how other people managed.

Ernie

[briarrose]

Ernie

I don't know much about this but I would recommend contacting the local hopitals. Usually they have education departments and can give you advice. Many already hold their own support groups for heart disease, chronic fatige, etc. Sometimes they can loan you a room once or twice a month. If they can't, I'm sure a local church would give you some space to meet.

steph

[briarrose]

You might also want to see if some local hospitals and churches can post flyers. Talk to some cardiology and neurology groups and see if you can leave them flyers for their offices.

[MightyMouse]

Good Morning Ernie,

I used to run and supervise 9 support groups for parents of children with disabilities. Here are some of my suggestions--and I'd be glad to also help if you'd like to email me privately with more specific questions.

1) post your request for names of people who might want to come to the group here...and on NDRF. Request that they email you with their interest and include a way to contact them via email for meeting announcements. This is preferred to a postal address, as that will cost you CASH.

2) do take the suggestion above and contact local doctors who see patients with these disorders. Additionally, you may want to contact your area docs who treat patients with related disorders like chronic fatigue and fibromyalgia, as you know there is overlap in diagnoses. If there are support groups in for CFIDS and Fibro, you might want to make a trip to their meetings and introduce yourself and invite people to express any interest in a group.

3) if, after all that, you've got at least 6 or so core people with interest, start hunting for a meeting location that is comfortable and temperature controlled. Here in the US, the easiest places to get FREE meeting space is to use a public library or hospital. Call the main number and ask for the person in charge of scheduling use of the public meeting rooms. Not sure if this will work for you in Canada, but here in the states, many large companies have programs to donate back to the community. We used to work with one bank chain that had a very large public relations department and allowed us to use their conference rooms at night--these were the nicest of all our meeting spaces--comfy chairs, well ventilated, and sometimes even had a cafeteria we were allowed to use too. Churches and temples are also a place to request space.

4) Consider what time of day, day of the the week. You can't please everyone, but if you keep a consistent time/date, you'll get your best attendance (i.e. 2nd Tuesday every monthy at 7pm).

5) Keep a balance of open discussion and directed topics. In working with parents, those who're veterans of the group would become frustrated if the meetings were always open discussions--especially if there are many new people at each meeting because the questions are frequently along the same lines for most new people (things like progrnosis, major symptoms, where to find a doctor, etc.). Guest speakers can help balance that out--think about doctors who treat the disorder, psychologists who specialize in coping with chronic serious illness. Be sure to set ground rules with your members that these speakers are not to be used as a personal doctor's appointment.

6) If the group is successfully meeting for a few times, strongly consider trying to find a voluteer moderator/facilitator. You might look to a social worker or psychologist for this who has strong group management experience--also, both of these professions require community service as part of their ethics code. A neutral facilitator will allow YOU to also participate in the group and get the support you might need too...

Hope this help you. Do feel free to email me as I organized groups for more than 7 years as an employee of a not-for-profit advocacy and education company.

Nina

[Ernie]

Thank you Briarose. I will check with the local hospitals and never know, they might already have a group. I think I could attend the CFS group just to get the experience.

Thanks for listing all the steps. I really appreciate it. I will keep it handy and will email you later when I am more involved in the process.

Ernie