Definition of a local support group

•  What a local support group is:
• A place which offers patients in a similar situation a “hands on” level of support not available through email and discussion boards
• Real time discussion of treatments, side effects and psychosocial issues with people sharing a similar clinical experience
• A secure place where patients and caregivers can vent and discuss issues with others

• What a local support group is not:
• A substitution for expert medical care
• (Alternative therapies discussed, some people very adamant about these – always discuss with your medical team)
• A place to persuade others to do things “your way”
• Something to take the place of advocacy organizations like Cholangiocarcinoma foundation, CanLiv, Patient Advocate Foundation, ACS, etc.
• It is not a forum to proselytize to others

Why a local support group?

• A local support group offers patients in a similar situation a human touch level of support
• A support group offers emotional support to both patients and caregivers

Who to enlist to help?

• Your Medical Team:
• Physician: Enlist their support. Explain why you want to do this. You want their verbal or written (email) recommendation to talk to other staff, e.g., Social Workers, Support Staff
• Nurses and Mid---level Practitioners: Second tier if physician does not show interest
  
  
• Social Workers are the key to making this happen
• Most large medical centers have 1 or more social workers available to cancer patients. Once you garner the physician’s support, approach the social worker
• They may be leading multiple support groups
• Be consciences of their time, especially outside regular work hours
• Be prepared to assist; Offer to co---facilitate and do the leg work
  
  
• Support Staff
• Larger teaching hospitals may have Patient Advocates who can assist with copying flyers, communicating

How to recruit?

• Your physician’s staff or department social worker should have email contacts for all relevant patients
• If they cannot provide them to you (they will need to get permission first – HIPAA– then you draft the emails and the staff can send them out to patients
• Blind copy all addresses and send to staff or self

Logistics – where & when to meet?

• Find a neutral place, preferably at a local medical center
• Check with Patient Advocate or Social Worker at hospital if there is a conference room you can use
• If no space at a hospital is available, look at local restaurants which can provide a partitioned room
• Keep in mind it should not be any exotic food, nor should you attempt to meet in the middle of the restaurant where others can eavesdrop
• Check it out in advance for significant food odors, being mindful of those in the middle of therapy
  
  
• If in a conference room, determine if refreshments are allowed
• If so, ask social worker or staff if there is a fund to purchase bottled water, coffee, soda or donuts
• Avoid high olfactory foods and hot foods
• Determine if aXendees can bring their own food but set ground rules in your email communication
• Don’t forget napkins, cups, utensils, sugar, sugar substitute, creamer, etc.

• Be consistent
• Secure the same place, day of month and time for each meeting
• Once a month is usually sufficient considering patient’s therapy and social worker’s time
• Lunchtime or early evening work best
• Teleconference capabilities for those unable to make it to meeting
  
  
• Check out conference room ahead of time
• Are the any special considerations about the room?
• Are there enough chairs?
• If you were to need more, who would you contact to get them?
• Is it easy to find?
• Include directions in your email and on notices – don’t assume everyone knows their way around the center as they may becoming from other facilities
• Bring some Kleenex®

Getting the word out

• Email works best as it is instantaneous and offers for easy responses. Telephone is not good as some view it as too intrusive
• Print off 8.5” X 11” flyers which promote the meeting and include date, time, location and who to contact if there are questions
• Example Flyer

Where to post flyers

• Ask for permission to post around the medical center in areas that CCA patients visit:
  • Exam rooms
  • Laboratories and draw stations
  • Chemo suites
  • Social Workers office
  • Dietitians office
  • Nurse’s station

Contacting others

• Call other surrounding hospitals and ask to speak to Patient Advocates or Social Workers
  • Let them know of your group and that it is open to all patients, not just those from a particular medical center
  • Secure their email addresses and permission to send them invites
  • Ask if they know of anyone else who should be on the distribution list
  • Ask them to forward to their patients
• Use Google to search for other facilities in the area which have cancer centers
  • Email followed up by a phone call is best way to contact other centers
• Don’t forget to reach out to:
  • American Cancer Society local chapters
  • Cancer Coalitions
  • Liver Cancer groups
  • Cholangiocarcinoma Foundation

Really getting the word out

• Put a notice on the discussion board on the Cholangiocarcinoma Foundation Website Discussion Boards > Cholangiocarcinoma Foundation >
• Events
• Notify Mark at Cholangiocarcinoma Patient Blog and he will post a notice on website (http://cholangiocarcinoma.wordpress.com/)
• See if the cancer center you’re holding the support group at has a web based bulletin board to post a notice on

Notice of meeting

• Send out email notice of first meeting 2 – 3 weeks in advance
• Send out reminder email 1 week in advance of each meeting
• “Blind copy” all addressees and send to your self or to social worker to protect privacy
• Write all information in body of the email and avoid attachments which may prevent the email from reaching your audience

Day of event

• At the introductory meeting and whenever you have new members join the group, it is always a good idea to go over some ground rules:
• This is a forum for open discussion
• Everyone should show respect for diverging opinions and beliefs
• This is not a forum for proselytizing, persuading others of “better” treatment options or judging others
• Cell phones and Blackberry's off
• Keep it light at first!
• Everyone should feel comfortable sharing as much or as liXle of their “story” as they want to
• Ask for feedback – what the members of the group want to hear about, if they want guest speakers:
  • For example: Nutritionist, patient advocate, social work team (to explain services available)

After the event

• Follow up via email
• Ask for suggestions of what you and the social worker can do differently
  • Be cautious of too many divergent requests for location, food, etc.

Summary

• There are many resources available to help you set up a support group
• Be persistent
• Be patient too
• Have some fun with this