In September this year I took part in a community outreach peloton tour, organised by Flippin’ PainTM. Flippin’ Pain (www.flippinpain.co.uk) is a public health campaign that aims to flip the way people, think about, talk about and treat persistent pain. This was achieved by raising awareness of the problem of persistent pain, spreading the word about modern scientific understanding of pain and giving people the knowledge, skills and hope for a better way forward.
The Flippin’ Pain formula is to educate, engage and empower through six key messages:
- Persistent pain is common and can affect anyone
- Hurt does not always mean harm
- Everything matters when it comes to pain
- Medicines and surgeries are often not the answer
- Understanding your pain can be key
- Recovery is possible
The campaign took part in Lincolnshire, that is one of the highest areas in England, for GP opioid prescribing for persistent pain (The Pharmaceutical Journal, 2019). The tour started on Sunday, 12th September and finished on Friday, 17th September. The team, of varying abilities and fitness levels, included healthcare professionals, pain scientists, GP’s, researchers, and people living with persistent pain, wearing branded cycling gear, and raising money for charity. The peloton cycled over 250 miles between destinations throughout Lincolnshire, where over 20 interactive events were held during the days and evenings, raising over £5000 for Pain Concern.
Chronic or persistent pain often serves no useful purpose. Medical assessment and diagnosis do not usually lead to the pain going away, and over time it may affect what we can do and daily activities (British Pain Society, undated). Pain can be secondary to (caused by) an underlying condition (for example, osteoarthritis, rheumatoid arthritis, ulcerative colitis, endometriosis). Persistent pain can also be primary, with no clear underlying condition, or the pain appears to be out of proportion to any observable injury or disease (Nice, 2021). It affects between 30-50% of adults in the U.K., yet the design and delivery of healthcare does not fully embrace the complicated biological, psychological and social nature of pain. Persistent pain is reliably associated with healthcare appointments, and with significant physical and emotional impacts, including anxiety, depression and disability (Turk, Ohrbach, & Patel, 2016). Often public understanding of the science and management of persistent pain fails to reflect best scientific understanding.
Throughout the tour we were accompanied by the Brain Bus, providing a host of scientific experiments and interactions that showed how the mind can play tricks on our body sometimes, which can lead to physical sensations because of the messages getting confused and the brain not understand the signals properly. This is one reason persistent pain can be very difficult to treat, because we cannot just re-boot the system.
Here in Lincolnshire, I work in the pain management service as a registered Occupational Therapist and Pain Specialist. I am part of a multi-professional team and my role involves conducting multi-dimensional occupation-focused assessments to establish the impact of persistent pain on all aspects of an individuals’ life and their occupational role. I facilitate individualised personal goal setting, choices and preferences; share knowledge and pain education advice; support establishing daily routines, graded activity and signposting to services, when appropriate. Many patients feel they have exhausted treatments available to them, often presenting with low self-esteem impacting their self-worth and independence. Unfortunately, modern science and research has not filtered down to either themselves or healthcare professionals they may have come into contact with. I feel my role offers some hope to begin to explore alternative ways for people to maximise occupational performance and learn to live better alongside pain, in order to engage in meaningful and fulfilling activities.
Interventions may include the use of metaphors which are a powerful way to provide knowledge and educational material, assisting patients to start thinking differently about pain, and identify personal strengths, or challenges towards ongoing self-management (Iwama, Thomson and Macdonald 2009). The cycling was a personal experience of a metaphor that I feel can be related to people living with persistent pain. At times it was an uncomfortable experience, being both physically and emotionally challenging. Day one was beautiful and full of sunshine, and the second day we had rain and cold winds, that tested our resilience. However, I was reminded by a team mate that you have to have the rain to see the rainbow, and that statement provided me some strength and courage to just be in the moment, value the opportunity, with the knowledge it will pass and all with be okay.
The terrain was up and down, with a mixture of flat lands in the south of the county to steep hills and fabulous scenery in the north. We had the opportunity to ride with people from a variety of backgrounds, with professional and personal experiences of persistent pain providing insightful conversations, and an opportunity to promote occupational therapy and spread awareness of the broad scope of the profession. There were mechanical failures, punctures, people falling from their bikes, and some needing to walk with their bikes due to fatigue. However, with good planning, the training we put in, and working together as a team, we completed the tour. I feel this experience demonstrates to people living with persistent pain, that sometimes you may feel anxious, not have all the skills or physical fitness you would like, but an increase in discomfort and pain can be absolutely worth it. These experiences are not always easy, but you can often do better with a good multi-dimensional team around you to hopefully achieve a positive outcome.
I would like to give a special thank-you to Lincolnshire CCG, pain services provider Connect Health and our sister campaign Pain Revolution, Australia (www.painrevolution.org) for their inspiration and continued support.