What do I do now? Advocate!

What do I do now? Advocate!

By Terri A. Lewis, PhD

Terri A Lewis, PHD

Terri A Lewis, PhD

Editor’s note: Terri A. Lewis, PhD, is a regular contributor to National Pain Report and is involved with the Rally Against Pain meeting that is occurring this today in Washington D.C.  National Pain Report ran an article about this rally, to which she submitted the following update in the “comments” section, which we believe warrants its own article. 

Welcome to the first gathering of individuals and families who are challenged by chronic pain. Whatever the experience that brought you here, we are joined by a common experience – injury or illness, changed status, the need for competent and sustainable health care appropriate to your injury or illness, and the need for reliable community resources.

I want to use my time to address the issue of ‘advocacy.’ What is it? How do we use it?

The first question after the onset of illness or injury is generally “What do I do now?” Along with this is the dawning recognition over time that you don’t know what you need to know to effectively navigate the system issues that you’ve been thrown into. Rarely do you have an understanding of the injury or disease that requires ‘instant expertise.’ So, I want to address this in two ways – the focus on the beloved individual who has been injured or experienced the onset of illness, and the family, care partners friends and community systems that have to be mobilized to advocate on behalf of the individual as they adjust to their altered status.

The experience of an injury that leads to a psychological or physical disability is similar to enduring a mourning process and that some equate with the loss of a loved one through death; The mourning process can involve adjustment to the disability the person experiences and may progress through a series of recognizable stages or tasks – shock, denial, anger/depression, and adjustment/acceptance. The types of advocacy skills that we cultivate and employ are specific to different needs. As importantly, the models through which medical services are delivered and the goals we set for recovery are wholly different depending on the stage of adjustment.

These stages are expected, but they are not orderly or neat. People with disabilities, especially those with new disabilities, go through these stages at their own paces and some might skip whole stages entirely. A difficulty exists when the person has trouble with resolving one of the stages or becomes, ‘stuck.’ When this happens, further progress towards adjustment and acceptance is hindered. Often, becoming stuck is a matter of system failure or processing the person through the wrong health care model of recovery coupled with inadequate advocacy approaches. We use our advocacy skills to unstick what’s not working.

The one thing we rarely talk about or recognize is that individuals do not operate in isolation. They are surrounded by family, friends, and community who are affected by the changed roles imposed by illness or injury of a family member or friend. This change requires adaptation of roles and responsibilities and imposes whole new roles for advocacy. But we rarely acknowledge or address the importance of this as important for recovery of the entire family. During the time it takes to move from the states of shock and denial to adjustment and acceptance, we are also adapting and incorporating the advocacy skills necessary for family adjustment. In short, the family also goes through these stages parallel with their family member and their ability to move on requires learning new self-efficacy behaviors we associate with the process of advocacy. And that is why you are here.

A number of different types of advocacy exist. The strength of each advocacy type depends on how well the individual, familys’, group or organisation’s advocacy efforts to meet the key elements expressed in the definition of advocacy. The types of advocacy have been categorized in different ways. There are five types of advocacy that we are often challenged to learn on the fly as we move through a traumatic event. Just as the individual moves through the stage of denial, families also move right along with this – but unlike recovery from the injurious event, the family structure is injured by a change to internal roles and responsibilities. All of our energy is focused on the individual, often to the exclusion of addressing the development of knowledge and skills necessary for the family to adequately support and advocate for their individual and their own needs. I think we need to talk about this so lets discuss the types of advocacy and how we can employ them systematically and effectively:

Self-advocacy refers to an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. It involves making informed decisions about your medical care and taking responsibility for those decisions. Self-Advocacy is learning how to speak up for yourself about decisions that affect your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination. It is very affected by the model of medicine and our own levels of confidence to engage with the discussion.

Individual Advocacy is a form of informal advocacy, wherein parents, spouses, brothers and sisters, relatives, and friends take on advocacy roles and speak out to persistently advocate for those who are vulnerable. They address the unrecognized and unseen, and struggle with injustices with little or no support. These individual advocacy efforts can and do last many years. Solo efforts can isolate individual advocates from their communities by the very nature of their efforts, particularly where the issue is controversial or perceived as detrimental to the wider system or environment in which the issue is placed. Chronic pain and access to health care is such an issue. These advocacy efforts by individual people on behalf of other people need to be supported, nurtured and protected. Individual advocates benefit from being connected to others doing advocacy; to share the effort, to seek support, or to develop a collective response. That is the benefit of social media platforms where individual advocates can easily link with advocacy groups for information resources and further contacts. The limitation of social media however is that it may not deliver the specific skills building necessary to assure effectiveness. Voluntary community based organisations are another form of individual advocacy that pay staff to advocate for individuals. Some offer training at the local level.

Parent/Family advocacy is concerned with advocating on issues that affect the person with a within their family. The focus is generally on the needs of the person with a disability but some parent advocacy focuses on the needs of family unit first. While parents have substantial needs for support and resources, when we talk about parent and family advocacy I refer to this advocacy by groups aligned around common needs to address the needs of their family members.

Citizen advocacy is a community based movement that aims to recognize, promote and defend the rights, well being and interests of people or specific issues. You are doing this here today. It does so by finding and supporting caring, responsible citizens who make long-term voluntary commitment to make a positive difference in the life of a persons who are challenged by “at risk” situations within their communities. Each citizen advocacy relationship is unique. The citizen advocate may for example, engage in a protégé friendship, and be authorized by affected individuals to represent specific experiences and opportunities, serve as a spokesperson or to offer protection from abusive processes. The citizen advocate may serve in a ‘helper’ role, as an at large member of the community whose concerns are aligned with specific community needs expressed by individual members of the community.

Systems advocacy is primarily concerned with influencing and changing the system (legislation, policy and practices) in ways that will benefit people as a group within society. Systems advocates will encourage changes to the law, government service, program policies and community attitudes. Usually systems advocacy does not do employ individual advocacy. To do so can cause conflict around the use of resources, focus and purpose.

The advocacy toolkit contains a number of key elements for our use. Advocates must operate with minimal conflict of interest, and where they exist, they are disclosed and available for review. The advocate operates not from a position of personal benefit but from a position of sincerely held interests. Advocates function by speaking out, acting or writing to promote the well being and social justice needs of a person’s welfare. Advocacy requires something referred to as “vigour of action” represented by depth of feeling in advancing the cause or interest of another, taking a lead, initiating, managing a sense of urgency, and doing more than what is done routinely to challenge the community.

All activity is not advocacy – it is important to keep that in mind. Not all activities are productive or effective. Not all persons are effective advocates for their ‘causes.’ As an advocate you need to be prepared; to bend over backwards to pursue and achieve even small, ordinary gains. You need to commit to becoming an effective and informed spokesperson for your issues. Instead of only writing a letter to the editor or responding to a facebook post, it may require you to also pick up the phone and make an appointment with your elected representatives. Complaining is not the same as advocating. Instead of registering your concern once and claiming that it didn’t do any good, you need to develop an up close and personal relationship with people who are charged to manage specific systems and manage change.

The question for each of us here today, is what will we do tomorrow? I encourage you to take a number of very specific steps:

  • Decide how you want to advocate and make a commitment to become the most effective you can at the strategic method you choose – self advocacy, individual, family, citizen, or systems advocacy.
  • After you have staked out the action you are going to employ, become informed and take responsibility for acting on that knowledge, becoming an expert for the problems you want to address.
  • Ask for help from the advocacy community.
  • Share your what you learn. Remove barriers. Play well with others.
  • Contribute to the kind of data collection that improves citizen and system advocacy and results in improvement to public policy. Patient generated research is critical to moving the needle.
  • Support other advocates in their efforts.
  • Develop a personal relationship with your community leaders and elected officials. Invite them into your homes and illustrate for them the gravity of your concerns.

Thank you for your attendance here today. It took an enormous commitment to overcome all of the difficulties associated with your attendance. We are unorganized, but we are organizing. The stakes are too high to step back from the precipice of this broken health care system. Your VOICE IS IMPORTANT. NOTHING CHANGES UNTIL WE DO! Our loved ones are depending on us. Be well, enjoy each other’s company, and take the time to enjoy everything that is free in beautiful Washington, DC!

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Authored by: Terri A Lewis, PhD.

There are 8 comments for this article
  1. Pam at 3:12 am

    Thank you Dr Lewis and everyone else who made it on my behalf and the behalf of all pain pts. I wish I coukd have attended but I didnt have a ride and I coukdnt drive the four hrs on my own. I pray our cries are heard, That there are lawmakers in our government that have some ethics and realize this is wrong and inhumane what they are doing to pain pts. I wish I never needed a dam pill ever again, i wish i were the ole me again, the one full of life, love, laughter, this bitter, angry , hopeless person i am today is depressing to even be around. I am forever grateful to all of you who made the rally, <3

  2. Sandy Miller at 12:57 am

    Maureen, exactly the way I feel. I completely understand. I pray they can make some headway and if I was able, you betcha I’d be there too. This is just crazy taking medications from us suffering unrelenting pain that took us years to find the right medication that gives us some, a little relief. I thank all the doctors and those who put this rally together, you guys are awesome. Let us know how everything went! Thanks again, we have to do something, write letters, just let me know.

  3. Dave at 3:59 pm

    Terri provides and interesting and insightful framework for advocacy related to pain.
    Pain care in America is largely the product of institutional forces that seek to simplify people in pain and pain care and allow institutions to profit off pain care. And that is the main goal of our pain care system. Helping people in pain is secondary to meeting the needs of our institutions. This model of pain care disenfranchises people in pain for it doesnt allow tthem respect or responsiveness from our institutions and has created an underpowered, ineffective and burdensome pain care system that has failed individuals, families and communities.
    Our institutions lack vision, lack accountability and have failed to call for lowering the prevalence of pain, or the costs of pain care or the burden of pain and pain care treatment- on the contrary they have contributed greatly to the burden of pain care. People in pain have been subject to ridicule, rudeness, misdiagnosis, racism, disrespect, and are often treated as children by doctors and government.
    So, for my part our government, our health care industry, our legal system, our health care industry has failed people in pain. They mistakenly rule us rather than serve us. People in pain are an underclass that have been largely silenced and treated poorly by our institutions.
    As with womens rights, civil rights, labor rights, etc- its up to the people to demand needed reforms. So people in pain need to demand a new bundle of rights to protect them from institutions that have made a terible mess of our pain care system.

  4. Gerri-Lu at 6:18 pm

    Terri, thank you for your advocacy and for the best descriptions I’ve ever seen, of the different types of advocacy available to us. It will help to clarify people’s objectives, where they can begin, and which groups they can focus their delivery to.
    This Rally Against Pain today, is sorely needed. (Pun intended!). As a chronic pain sufferer for over 3 & 1/2 years now, I could write a book on how many barriers I encountered along my journey, from the time I sustained the injury, up until now, when Pain Clinics (& their doctors/staff), are being MANDATED from the CDC, on how to treat THEIR pain patients. I AM informed, because I was a healthcare professional for over 30 years and I did a LOT of research, from helping to get the right interventions, after doctors dropped me because I was a Workers Comp pt., so I had to READ the CT Scan results and make suggestions as to which specialist I should then follow-up with, because the doctor didn’t sign off on that particular diagnostic test, because it would’ve meant more treatment/surgery for me, and they didn’t want to deal with the horrendous WC staff. They were despicable and I can’t blame the dr. for wanting to avoid them, but I can, and do blame them for dropping me, because I’m a human being, in severe, debilitating pain, and what about the Hippocratic Oath? Nada-out the window. But I self-advocated as difficult as it was, because there weren’t any advocates for me. WC ONLY out for themselves and their
    Insurance Company. My impressions were make the patient sicker, make EVERYTHING more difficult by being mean, obstructing healthcare plans. Get the pt. to give up. One RN approached my Chiropracter before he even met me, and told the dr. to sign off that
    I was malingering, and my injury wasn’t anything serious. Ha! The Chiropractor had morals and good ethics and told me what transpired and he was a witness for my case, to my attorney. I requested a different Rn for my case, but she was just as unethical as the first. Weekly assessments were supposed to be done by her and she submitted signed assessments that she saw me, when she never did. So her submissions to the Insurance company were biased and unprofessional. I won’t continue with a multitude of examples, suffice it to say, there were, and continue to be more, every time I have to deal with the Pain Clinic. Initial obstacles with Providers, then WC, now the Pain Clinic. I continue to be informed about what the CDC & DEA are involved in, which impacts how the patient, is going to be treated. The latest is “get everyone on suboxone.” Why? Is it because the Brit who put a patent on it is losing money, because doctors aren’t prescribing it? Push suboxone, doctors are being mandated to prescribe, or else…….yes, there will be unpleasant repercussions, such as pay cuts. This Opioid Crisis is man made. Made by the pharmacies and bootleg pharmacies making Oxycodone 30mg IR’s and Vicoden/Hydrocodones TAINTED with Fentanyl. So drug addicts unknowingly buy the tainted opioids and die of an overdose, because they’re too potent. So this partially caused the so called epidemic and increase in OD’s. Now the CDC says they will allow 25% FEWER opioids to be used, beginning in 2017. Cutting the supply by 25%, but what are the alternatives for pain mngmnt. Kratom powder from tea leaves can help many people, and progress is being made for that botanical to continue to be available to people without the DEA banning it. Some people are allergic to that, so what is available for them? MAYBE medical marijuana, if you live in a legal state and you have an approved diagnosis. Until MMJ is legalized nationwide and pt’s are prescribed the opiates they need from their dr., there will continue to be problems, more overdoses and deaths from using tainted, illicit drugs, more addicts being MADE from being placed on rx suboxone, and the cycle will continue. STOP THE CYCLE. Give pain patients the medicine they need. Legalize medical marijuana. Educate doctors and people about Kratom. Don’t keep it for Bigpharma to line their pockets with hundreds of millions of dollars when chronic pain patients need and deserve help. This is why we pay monthly insurance premiums. For good treatment options. Not for BigPharma to work with doctors at making us sicker so we can take more of their pills like suboxone. It may sound corny to our healthcare CEO’s, but PATIENT care MUST take priority over Capital gain. We need that to happen NOW. Doctors want it to happen NOW. They don’t want to have the CDC mandate how they are to treat their patients. That’s illegal anyway. All is just my humble opinion. But it’s an informed, researched and educated opinion. Power to pro Pain Network Advocates.

  5. Maureen at 6:22 am

    To Dr. Lewis and all who are there in DC on my behalf,
    As I awakened in awful pain this morn (as I do every morn) I remembered that you are all there and I prayed for you.
    I greatly wish that I was capable of being alongside you today.
    I’m a strong advocate for our community and have been hoping for a day such as this to come! You are all awesome in your endeavors! I’m grateful for you.
    Thank you for all that you are doing there today and may God open the ears of those who need to hear and their eyes to see those who struggle in pain there today.
    I can’t wait to hear more about this day! Maureen