We took a few minutes to talk with Jean about her experiences as a Support Group Leader. Prepare to be inspired!
Why did you become a Support Group Leader?
I became a Support Group Leader for a variety of reasons. The core reason is that I love to help people. When I was diagnosed, it was difficult finding information, whether it be medical professionals treating the disease with the latest treatments, learn what the latest research is or talking to someone that simply understood my experiences. When presented with the opportunity to start a Support Group, I had no other choice. It gave me a purpose. I retooled my skills that I developed from my work experience to focus on helping others.
Where did you begin your journey as a SGL?
My journey to start a Support Group began at the time I attended the MPNRF Educational Conference, in Chicago, IL, 2012. I was so amazed. The presenters and the quality of research and the wealth information presented were outstanding! There were approximately 200 people in the room; they too were thirsting to learn about our disease. I asked one of the conference planners if they could bring this program to my home town. They informed me that it was not possible at that time. They told me the best way to get the information out was to become a Support Group Leader. So I set out to do just that
What were some of the challenges you came across? How did you overcome them?
My challenges in the beginning were that there was no real direction as to how to become a Support Group Leader. I was not a social worker and I had no medical experience, nor did I ever attend a support group meeting, I just was living with this disease! I contact the MPN Research Foundation to find out who the other Support Group Leaders were. I spoke to them over the phone. They told me what they were doing at their meetings. I contact other cancer groups, but didn’t get a lot of support due to the fact that I was not a social worker nor did I have any form of medical experience. I eventually received information from and individual who gave me some additional direction. I then contact several places to have a meeting however, they wanted to charge me. Eventually I was given a room at the local community hospital. I requested the room for 2 month in advance not having any patients in the group. My next step was to find patients! I requested the MPN Research Foundation notify their patient base to inform people of the meeting time and place. At the first meeting I had 4 patients, 2 widows to the disease, and 3 caregivers. Getting this group together was like making a cake backwards; had the end product a good cake but didn’t know what the ingredients were, didn’t know what it tasted like or how long to bake it!
I have a major challenge with the 2 major hospital groups in our region. They are more interested in their concerns of their “MODEL HOSPITALS” instead of caring for the needs of the sick patient! Other challenges were that I did not get a lot of support from the physicians’ offices. Some physician offices simply have told me “They Don’t support, Support Groups!” I have persevered and reach patients and patients have found me whether it be Facebook, flyers that I post, emailing’s to physician’s office or simply work of mouth.
Currently, we meet at the former “Gilda’s Club of Western PA” now known as “Our Club House.” They have been very supportive of our needs. If we have a “Meet the Doctor” program they provide us with a great meeting room and all the amenities; conference phones, projection equipment, large screens and etc. Another reason I really enjoy their facility is that if there comes a time that I physically cannot continue with the group, “Our Club House” is well equipped, with qualified leaders, that could take over the group and everything I have done can continue.
One person in particular has been very helpful, her name is Francine Morrison. She was the Patient Care Coordinator at LLS of Western PA at that time. She became the mixer to forming our cake! She helped me broaden my resources from pharmaceutical companies to healthcare providers and other resources that I would never have known, if it wasn’t for Francine!
Please run us through SG Meeting from beginning to end.
Generally we start out with my welcoming everyone. I reiterate at every meeting that I have no CLINICAL EXPERIENCE. The purpose of this meeting is to listen, speak of what has worked for us in similar circumstances, and to help member explore their options. We are to respect each member’s rights and personal decisions. The meeting is for patients, their families, and care givers. There is no cost to the meeting. At this point I have the participants introduce themselves to the group. Some people want to tell us which disease they have and what they are taking to control the condition and share other experiences. After the introductions I present one of the following
- give an update of information that I have learned from a conference
- If I have a CD from one of the conferences I will show a segment of it
- have a conference call or meeting from a medical professional
- I ask if I can help with anything until the next meeting
Generally the 1 ½ hours is up quickly. We meet bimonthly from March to November. Many of the patients travel an hour to get to the meeting.
What would you say to an aspiring Support Group Leader?
Many times this is the only option a patient has, when diagnosed with a rare disease, to learn and connect to other patients. A rare disease is not RARE when you have it! Sometimes it a lonely feeling, when you have a condition that is not common. Support Groups can help fill that void!
I have found the role of a Support Group Leader has been very rewarding. I have had patients have the disease for over 20 years and never spoken to another individual with their condition. They are so appreciative. I would say reach out to others that have formed groups, learn everything you can then run with it! Don’t look back!