What Can You Do?
Advocacy can be as simple as helping to speak up for the rights of a friend or loved one in pain to testifying before Congress to ensure that voices of those most affected by pain are included in pain policies.
Ways that you can advocate for the rights of people with pain include:
- Knowing the rights of people with pain and having the courage to speak up about those rights.
- Becoming educated about issues surrounding appropriate treatment of pain.
- Increasing visibility of issues related to pain in your community.
- Building a network of pain advocates that will help you increase your voice and spread your message.
- Reaching out to people who are influential in raising awareness and determining pain-related policy, such as journalists or elected officials, as well as those in the greater community who will benefit most by learning about their rights to pain care.
- Serving as a voice for people in pain through your professional organizations and through research.
Ready to get started? Check out the Take Action section.
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 and taking responsibility for those decisions. Whether you are a person with pain, a caregiver, or someone who advocates on the behalf of others, self advocacy is an essential skill to learn and embrace.
Self advocacy is important. It is about understanding your strengths and needs, identifying your personal goals, knowing your legal rights and responsibilities and then communicating these to your family, friends, and your heath care team. This is the first step in your journey to ensure the appropriate diagnosis and treatment for your pain.
Through being your own advocate, or an advocate for someone you care about, you become empowered – with information, knowledge and self respect.
Please view the video below to get started on your journey into self advocacy. We hope that the information and resources on the In the Face of Pain website are helpful to you in your pain advocacy efforts.
Self advocacy…it’s all about YOU!
This video is an introduction to self advocacy and why it should be important to you. Whether you are a person with pain, a caregiver or someone who advocates on the behalf of others, self advocacy is an essential skill to learn and embrace. YOU may be the only resource that assists your health care team in delivering you the quality care you want and deserve. You are the most important advocate!
Barriers to Pain Management
“The evidence that physicians and nurses do not treat pain adequately began to appear in the medical literature nearly 30 years ago. In the following decades, the accumulated data showed that many types of pain – acute pain, cancer pain, and chronic nonmalignant pain – were being under-treated. The reasons offered for under-treatment, usually characterized as ‘barriers’ to effective pain relief, were remarkably consistent across the literature. Despite numerous calls to educate health care professionals about pain management, only the rhetoric has expanded.”iRich BA.“Physicians’ Legal Duty to Relieve Suffering,” Western Journal of Medicine. 2001. 175(3):151-152.
Unfortunately, many barriers prevent effective pain assessment and treatment. Some barriers exist for a reason. Health care professionals are concerned about their patients, patients are concerned about their health, and the health care system struggles with providing effective health care at a cost that can be sustained. However, over time, each of these groups has contributed to building barriers to proper pain management and making them appear insurmountable. This is where advocacy can help make a difference.
As an advocate, YOU are a part of the solution in helping to overcome these barriers. By developing your key messages and consistently communicating these to audiences such as your community, the media, legislative bodies, and your own peers, YOU are a part of the team that raises awareness of pain management issues and breaks down the barriers to effective pain care.
Health Care Professional BarriersiiMiaskowski, C.; Cleary, J.; Burney, R.; Coyne, P.; Finley, R.; Foster, R.; Grossman, S.; Janjan, N.; Ray, J.; Syrjala, K.; Weisman, S.; and Zahrbock, C. (2005). Guideline for the Management of Cancer Pain in Adults and Children, APS Clinical Practice Guidelines Series, No. 3. Glenview, IL: American Pain Society. Page 4.
- Inadequate knowledge of pain mechanisms
- Inadequate knowledge of pain assessment
- Inadequate knowledge of the appropriate use of pain medications
- Fear of producing addiction
- Concern about analgesic side effects
- Inadequate knowledge about how to treat side effects of analgesic medications
- Concern about the development of tolerance to medication
- Inability to differentiate between tolerance, physical dependence, and addiction
- Fear of regulatory scrutiny
- Time and reimbursement pressures that prohibit effective pain assessment and management
Patient BarriersiiMiaskowski, C.; Cleary, J.; Burney, R.; Coyne, P.; Finley, R.; Foster, R.; Grossman, S.; Janjan, N.; Ray, J.; Syrjala, K.; Weisman, S.; and Zahrbock, C. (2005). Guideline for the Management of Cancer Pain in Adults and Children, APS Clinical Practice Guidelines Series, No. 3. Glenview, IL: American Pain Society. Page 4.
- Reluctance to report pain
- Reluctance to take pain medications as prescribed
- Concerns about addiction
- Belief that pain is inevitable and not treatable
- Lack of access to pain management professionals
- Inability to effectively manage the side effects of pain medications
- Fear of masking new symptoms
- Cost of pain medications and/or other treatment modalities
- Lack of comprehensive insurance coverage for pain management
System BarriersiiMiaskowski, C.; Cleary, J.; Burney, R.; Coyne, P.; Finley, R.; Foster, R.; Grossman, S.; Janjan, N.; Ray, J.; Syrjala, K.; Weisman, S.; and Zahrbock, C. (2005). Guideline for the Management of Cancer Pain in Adults and Children, APS Clinical Practice Guidelines Series, No. 3. Glenview, IL: American Pain Society. Page 4.
- Failure to make pain management a high priority
- Lack of a systematic and collaborative approach to pain assessment and management
- Absence of accountability for pain management
- Lack of organized pain management teams
- Inadequate reimbursement for pain management
- Regulations and/or legislation that restricts access to needed treatment such as the prescribing and dispensing of controlled substances
Key Messages About Pain
Pain is a national health care crisis. It is our nation’s hidden epidemic.
- According to the Institute of Medicine, approximately 100 million adults in the United States suffer from common chronic pain conditions.iiiIOM (Institute of Medicine). 2011. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, DC: The National Academies Press.
- The annual cost of chronic pain in the U.S. is estimated to be $560-635 billion, including health care expenses, lost income, and lost productivity.iiiIOM (Institute of Medicine). 2011. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, DC: The National Academies Press.
When pain is properly managed, many people can resume their lives.
- Finding good pain care can be a challenge, but persistence can pay off – don’t give up.
- Learn about treatment options available. Often, pain management requires an integrative and multi-modal treatment approach. This could mean combining the use of pain medication with surgical interventions and complementary approaches like physical therapy, massage and acupuncture. But, remember that pain is unique – what works for you might not work for someone else.
- People often mistakenly believe that pain is something they “just have to live with.” They are often made to feel that the pain is “just in their heads.” Seek out support and offer it to others in their pain journey; validation and letting someone know that you believe their reports of pain can be a lifeline!
People who live with pain have a right to appropriate assessment and treatment of their pain.
- While pain can affect anyone regardless of gender, race or economic status, some people have difficulty getting adequate pain care. Women, certain ethnic groups, the elderly and the uninsured are more likely to be denied appropriate pain treatment.iv,Gagliese, L. “Pain and Aging: The Emergence of a New Subfield of Pain Research.” J Pain. 2009 Apr;10(4):343-53. v,Hoffmann D, Tarzian A. “The girl who cried pain: a bias against women in the treatment of pain.” J Law Med Ethics. 2001 Spring;29(1):13-27. viGreen C, Anderson KO, Baker TA, et al. “The Unequal Burden of Pain: Confronting Racial and Ethnic Disparities in Pain.” Pain Med. 2003 Sep;4(3):277-94.
- People who suffer from pain and their loved ones need to speak with their health care professional and take an active role in managing their pain.
- Pain can and should be treated. We all have a right to proper medical care.
Medication adherence and the safe storage and disposal of medications are important components of appropriate pain management.
- Nearly three out of four Americans report that they do not always take their medications as directed.viiNational Consumer League. “Medication Adherence Campaign.” http://www.nclnet.org/health/106-prescription-drug
s/234-ncls-medication-adherence-campaign Accessed August 21, 2012.
- Failure to take medications as instructed is not just an individual’s problem; it impacts everyone – as patients, caregivers, family members, employers, health care professionals, and taxpayers.
- Some medications have special storage instructions, such as keeping out of the heat or light. Also, it is important to safeguard medications in the home:
- Keep medications in a secure location and know how much medication is in the prescription container.
- Encourage friends and relatives, especially grandparents, to also safeguard and regularly monitor the medications in their homes.
- Consult a pharmacist about how to properly dispose of medications that that are no longer needed.