CRPS UK ~ a charity supporting people suffering Complex Regional Pain Syndrome (CRPS) and their carers
CRPS is an example of a condition that can be excruciatingly painful. The Budapest Criteria lays out the necessary signs and symptoms, which is important in terms of a diagnosis and for research.
There are several issues that need urgent addressing and I will help CRPS with their endeavours.
As with other painful conditions, the first problem lies with the misunderstanding of pain. The predominant model remains biomedical, however this approach does not offer answers for persistent or chronic pain. The biomedical model relies on finding a pathology or structural basis to explain the pain. Pain is poorly related to tissue state because it is part of the way that the body protects itself. We have known this for many years, the famous lecture and paper being published in 1979.
“society does not understand pain despite it being the largest global health burden
Early diagnosis is important for CRPS as it guides treatment and prevents unnecessary suffering. This means that CRPS needs to be recognised by healthcare professionals. A common scenario is an incident resulting in the development of the condition, which is not recognised, thereby treated inefficiently, the symptoms worsen and so the cycle goes on. An important note is that poor treatment outcomes and low expectations affect the outcomes. However, the third point is that pain can and does change.
The predominant messages in society (and healthcare) are negative and suggest that the person has to merely cope or manage their pain. With the bar set so low and teeing up the person’s expectations at such a meagre height, no wonder there is minimal improvement. Why would you bother? This is all wrong and certainly not in line with what we really know about pain and people.
We have remarkable potential and need to know how to tap into it. What is getting in the way of recovery and getting better? What are the barriers to living? In exploring these by using our own amazing resources, we can achieve success and change. We are designed to change; you cannot not change! It is a matter of choosing a direction.
“what do you want in life? How does it look?
My Pain Coach Programme stemmed from understanding and believing in people’s ability to change, their resourcefulness (that they may not know they have because of negative messages to self and from others) and the latest pain sciences.
Who am I?
For those who don’t know me and who are wondering why I have been asked to be a trustee for CRPS UK, here is a brief background. I am a physiotherapist with a background in pain neuroscience, rehabilitation and nursing. For many years I have worked with people suffering chronic and complex pain, giving them the understanding of pain that they can use to get better. In 2015 together with Georgie Standage, who came to see me with CRPS, we created UP | understand pain. Starting as an awareness campaign, UP was launched with a huge singing event.
UP is now focusing on delivering the right messages about pain via the new website due to be available as a resource this year, and workshops for people who need to understand pain: sufferers, their families, clinicians, policymakers, patient representative group and other stakeholders.
I am very excited to be working with the team at CRPS UK, driving forward to change the way that the condition is recognised and treated. At the outset, people need to understand pain and know their role in getting better and their potential. Setting the scene from the beginning is vital and then using the right approaches so that the person can overcome their pain and live a meaningful life.