Meeting With Your Legislator

The chronic pain patient that responded to my call to action about our communicatiion campaign sent me a wonderful email on how she suggests to others how to go about communicating with legislators. Her general comments about communicating can be found in the post Communicating With Your Legislator and on the communication campaign page. Here are her suggestions for the face-to-face meeting with your legislator or a staff member. If you are meeting in Washington, make sure the staff member is the health staff person.  I will make that available to anyone once they have been assigned in March. There is a place to ask for your legislator’s information on the side bar of the Communication Campaign Page.  It is pink and titled “Who Are My Health Issues Staff?”

The House and Senate calendars are on the Communication Campaign page so you find out when they will be in your area. You can also find my instructions about a face-to-face meeting on the Communication Campaign page. If you ever want me to join you at a meeting with your legislator, just contact me.

Tips if you get a Meeting Scheduled with a Legislator or One of Their Staff Members

1. Frequently the first meeting will be a 30-minute zoom meeting or conference call. Prepare an agenda and distribute it by the morning of the meeting to all attendees. Ask if the meeting is being recorded, and if so, ask if you can get a copy of it. Ask if anyone else from the legislator’s office is listening.
2. If you have a strong, long-term supportive relationship with your doctor ask them if they would be willing to testify or tell their story anonymously. Also, ask if they have any patients who may have stories they would want to tell to legislators.
3. Gather at least 12 constituents who have been affected by chronic pain or have a loved one who are willing to share their stories. Getting constituent testimonials and finding people who can speak can be one of the most difficult parts of the preparation, but it’s critical to show how many people are affected from throughout their district. As well, the story comes to life when the constituents speak. Give the people the option to have their testimonial confidential if they aren’t comfortable using their name.

   Look for other constituents who are chronic pain patients, veterans who can’t get adequate medical care or pain control, people who were undermedicated after surgery, and medical personnel who may be willing to talk anonymously. You need to have a number of people ready to tell their constituent stories to impress on how big of an issue this is and how many people are affected. Be sure to look for a diverse population to represent your area. To find more people who are constituents in a certain area, talk to local, well-known massage therapists as they work with many chronic pain patients and have heard many stories, do a search on “pain” in large Facebook groups for your area, talk to family/friends and ask if they know of others, talk to people who are in the medical field you may know or friends/family may know, call local religious leaders, call the VFW’s in your district, etc. It’s actually a lot easier to find people who are affected by chronic pain and people who didn’t have their pain controlled after surgery than you might think, but it may take some phone calls. Talk to a registered nurse who works in a long-term care facility and/or rehab center. Ask if they would be willing to speak or give you a written story anonymously – what’s happening to chronic pain patients in these settings is heart breaking. Since the DEA is also going after psychiatric medications now, feel free to include patient testimonials about those stories as well since it’s very closely related to chronic pain patient issues and often overlaps. Don’t call medical establishments to ask for medical personnel to speak about this issue – you will need to find them through family/friends.

   You may need constituents to verbally tell you their story, and then you can type it up and get their approval to share it with legislators. Find out if they also give permission to testify if it were to come to that. Aim for about 1⁄2-1 page typed up for each story.

   Be sure to give a document (preferably typed up, but hand written if not possible to get it typed) with all of the patient testimonials to the legislator or their staff member at least a day prior to the meeting so they will hopefully have a chance to look through them prior to the meeting. Do not share the constituent testimonials with other participants unless you have permission to do so. It may be easy for a legislator to ignore one or two people after a meeting, but it’s much harder for them to dismiss a larger group of people from across their district.

4. During the meeting, lead off with data about how many chronic pain patients there are in the United States. [50.2 million or 20%] Very few people realize how many people are affected by pain. Give facts and statistics about the current state of affairs for chronic/acute pain patients, and don’t quote any facts unless you also provide scholarly data to support the numbers you are using. Don’t spend too much time on this as the bulk of the time in the meeting should be spent on patient testimonials. It is, however, important to define the scope of the problem and use some important research data to demonstrate our plight.
5. Have several people lined up who are willing to share their stories. Have them say whatever is in their hearts. It could be a bad experience, it could be the fact they are in severe pain and can’t get any help, it could be about what they can’t do now that they lost their pain medications, it could be from a caregiver taking care of a loved one who suffers from chronic pain. No person can walk away from these stories without being significantly affected by what will be said here.
6. If you are running short of time, ask the person you are meeting with if it would be possible to extend the meeting by a little bit. Oftentimes they will.
7. Be sure to spend a few minutes at the end asking for what you want them to do legislatively to help this problem. [Repeal the Controlled Substance Act.] Also, be sure to allow the legislator or their staff member to ask questions throughout and ask them frequently if they have any questions.
8. Ask them to develop an on-going dialog about this problem and what can be done to address it.
9. Send an email to thank the legislator or staff member you met with within a week, and make sure you provide any additional information they asked for in a timely manner. Be sure to contact them regularly with new significant information, but don’t bother them unnecessarily too often.
10. Follow up with all the constituents who told their stories and thank them. Work together to stay in contact with this legislator’s office.
11. Keep in mind that if you’re a chronic pain patient, you may not be able to do everything mentioned in this article. If you are granted a meeting you may only have 1-2 weeks to pull everything together. Ask for help from others to do some of these things. Do what you can and feel good about what you’ve accomplished!