Editor’s note: The following is part four of a multi-part series of articles on RELIEF covering the IASP Global Alliance of Pain Patient Advocates (see part one here, part two here, and part three here).
Are you in the driver’s seat or the passenger seat when it comes to managing persistent pain?
That’s the question that Pete Moore, author and founder of The Pain Toolkit, repeatedly asked during “Is Pain Self-Management Your First Choice or Last Resort,” a workshop at the 2018 IASP World Congress on Pain. Moore, who has lived with persistent back pain for 28 years, says that he spent too long looking to the healthcare industry to “fix” his pain.
“I didn’t want to take responsibility for my pain. It was my doctor’s problem, wasn’t it?” he told the workshop attendees. He said he lacked the tools and resources, not to mention the confidence, to manage his pain on his own.
To help provide a starting point for both patients who are considering self-management as well as healthcare providers, Moore, in collaboration with two physicians, created “The Pain Toolkit,” a publication and website that highlights the skills needed for patients to become active self-managers of their pain—and, as a consequence, lead healthier and fuller lives. To date, more than one million people from across the globe have visited the website—and over 450,000 hard copies of the booklet have been printed in the United Kingdom.
“We need to switch from ‘Doctor, make me better,’ to ‘Doctor, how can you help me help myself?’” Moore said. “Think about how someone learns to drive. Where do people sit? The driver’s seat or the passenger seat? The way most healthcare professionals are trained puts patients in the passenger seat. But you can’t teach patients to self-manage if you are the one doing all the driving. Healthcare professionals have to find a way to not just put them back in the driver’s seat, but to do their best to never take them out of it to begin with. They need to be active participants, partners, in their own care.”
Moore’s session was one of a number of gatherings to engage patients at the World Congress, all as part of IASP’s Global Alliance of Pain Patient Advocates.
Tools for pain self-management
During his talk, Moore argued that, too often, patients look at self-management as a last resort. Instead, they rely on a healthcare provider, medication, or other treatment to swoop in and to deal with the problem.
But, “There are 8,760 hours in a year. The average patient only gets an average of three hours of professional care each year. The patient is responsible for the other 8,757 hours. That’s a lot of hours,” he said. “And it’s why it’s so important that we take the focus off ‘What can you do for me?’ and ask the patient, ‘What can you do for yourself?’ Too often, self-management is the last thing people do—and then only after nothing else has worked. Why should patients have to wait that long?”
So Moore created the The Pain Toolkit to promote a different approach to pain management. He noted the twelve basic tools in his toolkit: people with pain have to accept that they have persistent pain; get involved with their own healthcare; pace themselves; learn to prioritize the things they need to do; set manageable goals for their progress; be patient with themselves; learn relaxation skills; stretch their muscles; track their progress; have a setback plan; work with a support team; and keep it up.
“Managing pain is quite a bit about confidence,” said Moore. “The first step, accepting that you have persistent pain and beginning to move on, is the most important. Once that happens, the rest of the steps can fall in place.”
But, he conceded, some practice is required to ramp up that confidence. He pointed to learning to pace oneself as an example.
“Most people get stuck in a boom and bust cycle,” he said, describing how persistent pain often interferes with a person’s day-to-day activities and responsibilities. “You weren’t doing so well and you haven’t gotten anything done. Then you have a good day. You don’t feel so bad so you tell yourself you better catch up and do everything you couldn’t get to before. Then what happens? You overdo it and you’re back in terrible pain again. These are called setbacks.”
But taking the time to pace out daily activities—simply taking a break before feeling like you need one—can help. “Find your baseline: How far can I walk before my pain starts? How much can you do before the pain sets in? Once you learn that baseline, remember it—and next time, stop halfway. It takes practice to pace yourself but, once you learn how to do it, it can make a big difference.”
Turning a medical person into an educational person
Moore said that the toolkit is not meant to be the be-all and end-all for pain self-management but a guide to help healthcare providers inspire confidence in patients and help patients take the first steps towards self-management. The website provides information and guidance about all 12 steps, as well as interactive quizzes, games, and even chat functionality to help patients figure out what might work for them.
The Pain Tookit also provides tools for healthcare providers who are looking to educate and empower patients who are living with persistent pain. And that, he maintained, is also important to facilitating patient self-management. Indeed, healthcare professionals need to offer resources to patients so they can do a better job of accepting their pain, and allow themselves to drive their own care and self-management as they move forward.
“You need to stop being a medical person and become an educational person,” he said specifically to the healthcare professionals in the audience. “How can you help your patient think about self-management? What information do they need to work as a team with you and start self-managing their pain?”
Ellie Grossman, a primary care physician at Cambridge Health Alliance, Cambridge, US, attended Moore’s session and said she looked forward to taking the toolkit back to her patients, and to her provider colleagues.
“We need to help our patients figure out how to live their lives without always leaning on us,” she said. “We need to stop using words like ‘fix’ and ‘cure’—they are satisfying to use, but may not help patients get to where they need to be. We need to talk more about what self-management is and how it might work. This kind of information can help clinicians get on the same page about what self-management can look like, and can also help patients figure out a way that may work for them.”
For more information about the Pain Toolkit, visit: https://www.paintoolkit.org
Kayt Sukel is a freelance writer based outside Houston, Texas.
Editor’s note: The development of the IASP Global Alliance of Pain Patient Advocates is supported by an educational grant from Teva Pharmaceuticals. RELIEF’s news team is editorially independent of all sponsors and of IASP, the publisher of RELIEF. All editorial decisions about RELIEF’s coverage of IASP activities are made solely by the RELIEF editors, and all content is provided by independent, professional freelance science journalists.