Notes from Day 1 CRPS Conference in Cork
Welcome to my observations from Day 1 of the CRPS Conference in Cork last week. The notes from Day 2 will be with you shortly, but for now you can check out what went on in the room and beyond. I was there in a dual capacity: representing Understand Pain and keen to make connections with others who want to drive social change with regards pain, and as a trustee for CRPS UK.
‘no pain no gain’ — really??
There are always key moments in a day’s full programme, and there was one that stood out yesterday. More on that shortly.
We started with a walk through of the known predictors for CRPS by Dr. Andreas Goebel. Over the years, Dr. Goebel has become a well known figure in the world of CRPS, so it was good to see him kick off proceedings after an introduction from Dr Dominic Hegarty.
Risk Factors pre-trauma include age over 50 years, being female, suffering migraine, osteoporosis, asthma and taking ACE-inhibitors. Immediately post-trauma we should assess for the pain intensity (more pain, more risk), a lack of exercise, the fracture type, musculoskeletal co-morbidities and perhaps pre-existing PTSD (post traumatic stress disorder).
This is a key area for clinicians and our ability to recognise the likelihood that a person could develop CRPS. In honing the awareness and skills, this can only get better, which would translate into less suffering. Jumping ahead to the last part of the day, CRPS UK launched their new information leaflet that specifically targets the lack of knowledge and understanding.
The morning rolled on as we were treated to performances from the CRPS pop-stars. A gig typically gets going with the headline act at the end of a day of progressively bigger bands taking the stage. We started with a ‘main event’ as Lorimer Moseley entered the room via a video link.
Having shown off about his white, urine coloured wine as he described it, Lorimer gave us a typically witty yet informative talk. Always entertaining, LM is equally sharp in his observations from data, thereby keeping a firm foot in science. Admirably, he emphasised one of the often neglected aspects of being human in these situations — bias. Our declarations when speaking set the scene and let the audience know who we are (a bit).
The focus of Lorimer’s excellent work is certainly the brain. He has a way of transmitting the information in such a digestible way that most presenters would pay for a few of his (brain) cells. Together with the ability to make the listener feel on a par, this makes for easy listening whilst looking at some dots on a graph. I would not make head nor tail of those dots, but LM makes it engaging and everyone comes away knowing what they mean as well as an insight into the rigours of doing science well.
If there was a criticism it would be about the focus on the brain rather than the person. However, it is up the the clinicians and therapists to gather the presented information from the different speakers and form a bigger picture. Regular readers will know that my beliefs (and there will be bias in these of course) sit with the whole person approach, which is why Tim’s (Beames) talk softened the blow of data by bringing the human element to the room.
Tim and I have emerged from a similar place and whilst we will have our unique take, our interests lie in the person and that person learning to reduce their suffering. We both know that people can do this with the right ‘know-how’.
“The whole person approach is a must”
GMI (graded motor imagery) has been a big mover in CRPS. Tim was keen to point out that this is not a method to use in isolation, which I am sure everyone would agree with. In the physio world, over the years, there has often been the search for the recipe, the one treatment mode that will help. Littered with ‘gurus’, physio education has suffered as a result. I think and hope we are moving beyond this now. Integrated education when we share platforms with different disciples must be a way forward. Certainly in the Pain Coach Programme I want a range of clinicians and therapists so that we can create super teams with a shared vision, a focus on our strengths and each person knowing why they do what they do as a minimum.
Shock of the day goes to Robert Van Dongen as he described an approach whereby the person with CRPS receives hands on manual therapy that looks agonising. I say ‘looks’ because he treated us to a video of a foot and ankle being massaged and moved with audio. The noises coming from the recipient suggest it was not pleasant. The folk on my table who have CRPS winced and looked away, I felt something in my foot. It was provocative viewing! But, this is what is happening so we should discuss the treatment philosophy and work out whether it does have any long-term benefits. I am not sure. I will not be adopting this mode readers may like to know.
“Watching someone have a painful experience triggers real emotions and sensations in me”
The patients receiving the therapy were clearly motivated to undertake the programme. The short term pain of the treatment out-weighed the ‘pain’ of trying something else. There was a reward somewhere — maybe the relief of the heightened pain easing off! A key point here with a motivated patient is that they are likely to do well with any functional programme because they have prioritised and committed to taking actions in line with getting better. Would these people do equally well with a standard programme?
The shock wore off and we settled into a solid and well thought out talk on the team approach from Candy McCabe. I am into ‘teams’ and in particular ‘super teams’ so I was very pleased to hear Candy speak about some of the important principles. Great teams do great work but this necessitates a good leader, a vision, a recognition of individual and team strengths, engagement, and compassionate communication at the very least.
Bring a touch of the real world to the end of the day, we heard from two clinicians who described their experiences. Together with Victoria from Burning Nights, these stories brought the day to a conclusion as we moved from data, science and theory to what actually happens and the phenomenon of the lived experience. At the end of the day, it is this lived experience that is important. A person suffering CRPS, do they need to know about chemicals, brains, nerves etc, or do they need to know that they can be ok and that they can get better? For me that’s a no-brainer.
Whilst I agree that people must understand their pain (of course I do!), this is a practical knowing. The Understand Pain & Pain Coach Workshops deliver the knowledge, skills and know how, with the last element a vital part of the make-up. Without know-how, we don’t know. Not knowing results in fear, worry, and a hit and miss approach versus a knowing that leads to confidence, control and an outlook of being well.
Through the day there was acknowledgement that this is a difficult condition to treat and address for the person and clinicians. Traditionally thinking, yes this is true. But as with anything, if we start by saying how hard it will be, we are pre-empting. We are creating a lens of ‘difficultness’ through which we push everything else.
There is a choice to be had. What would happen if we used the lens of possibility and opportunity? We are designed to change and have inherent mechanisms of getting better. The offerings of a whole person approach tap into our potential as amazing human beings as opposed to focusing on a body area, a brain, a particular treatment approach. The reality is that we are all unique (see blog here on WUPs) and hence there is no single way of dealing with a condition. And that is because we are not dealing with a condition, we are helping a human being overcome a challenge and how that manifests in them. The plea here then, is to stop trying to fit a round peg into a square hole. See things for what they are and address each person in the ‘personalised’ way that they need and deserve. I will write more on the ‘how’ of this subsequently.
So, with that all in mind, we move onwards into day 2……