Tag Archives: UP

11Sep/17
Specialist Pain Physio for chronic pain

You are supporting meaningful change in society

Understand pain for social change

Supporting meaningful change in society

Chronic pain costs us more than any other health issue

Think about all the things that hurt and can go on hurting: back pain, knee pain, stomach pain (e.g./ irritable bowel syndrome), pelvic pain (e.g./ period pain, endometriosis, vulvodynia), headaches, migraines, sports injuries, chest pain and so it goes on. Pain is a universal experience, except in a very small number of people (congenital insensitivity to pain), and so it is no surprise that it can be such a significant social problem. It is a vital part of the way that we learn and protect ourselves, or survive.

“100 million Europeans suffer chronic pain, costing up to €441bn per year

This is a massive public health issue affecting millions of people across the globe. Pain is having a huge impact on society and society has a huge impact on pain. It is in society that the experience of pain is embedded and therefore why we must think of pain as a social issue. In changing the way society understands pain, we will transform this suffering. This is the reason for UP | understand pain, a purpose-led enterprise, to reach out to as many people as possible and advance the knowledge and practices in society to transform pain and live well.

Specialist Pain Physio for chronic pain

Richmond Stace | Pain Coach & Specialist Pain Physiotherapist

How are you contributing to this work? 

When you work with me to overcome your pain, part of your fees go towards the work of UP | understand pain. Similarly, when I run a paid workshop, this is matched with a free workshop for people locally. UP is also supporting the next generation by providing 2 free places at each professional workshop for local undergraduates. This is how you are supporting meaningful change in society.

“Each of your sessions is helping society positively change. 

If you would like more information about workshops, you can click here

If you would like information about the Pain Coach Programme to live well, you can click here

If you would like any other information or to book a session, please email us ([email protected]) or use the contact form below:

04Sep/17
CRPS Conference Cork 2017

Notes from Day 1 CRPS Conference in Cork

Notes from Day 1 CRPS Conference in Cork

CRPS Conference Cork 2017

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.

CRPS UK Leaflet

CRPS UK New Leaflet

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.

Lorimer’s urine

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……

22Jun/17
CRPS UK

Delighted to be a trustee for CRPS UK

delighted to be a trustee for CRPS UK

CRPS UK ~ a charity supporting people suffering Complex Regional Pain Syndrome (CRPS) and their carers

I am delighted to be a trustee for CRPS UK. In recent years I have spoken at the conferences and this year was invited to run the 2017 London Marathon for the charity.

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.

delighted to be a trustee for CRPS UK

Richmond Stace

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.

delighted to be a trustee for CRPS UK

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.

RS

 

 

13Jun/17

Steps forward at SIP 2017

Positive work done at SIP 2017

There were some important steps forward at SIP 2017 last week when stakeholders got together to discuss the societal issue of pain and agree ways forward. Positive work was done by the collective, consisting of patient representative groups, policy makers, clinicians, scientists and others.

It is rare that all the stakeholders meet, making this a very special conference. Here is an initial summary.

Societal Impact of Pain

Steps forwards at SIP 2017

The problems

The title of the interest group itself, ‘Societal Impact of Pain’ or SIP, drew me to the 2017 conference. I firmly believe pain to be a societal issue that has enormous consequences for individuals and the world in which we live. Whilst there are many meetings dedicated to pain, most focus on a scientific programme. This is only part of a much bigger picture that includes socioeconomic factors, culture, beliefs, gender, access to healthcare, understanding of pain and lifestyle, to name but a few. SIP, as far as addressing pain as it needs to be addressed is ‘on the money’. And speaking of money….

Chronic pain is a huge economic burden. The cost of pain to the EU each year is up to €441 bn — today that is £387 bn.

Wake up policy makers, yes that is £387 billion.

Back pain alone costs €12 bn per year in Europe although the most staggering figure is the €441 bn think about all the other conditions that hurt) and the source of immeasurable suffering for millions. It is estimated that 100 million people suffer in Europe.

“Pain causes a problem for individuals as well as a challenge for healthcare systems, economies and society (SIP 2017)

Clearly, what we are doing at the moment does not work. There are reasons for this, including the fact that pain is misunderstood in society: healthcare professionals and people (patients). This results in the wrong messages being purported, low expectations and poor outcomes. This must change and the SIP 2017 meeting was a perfect breeding ground for positive work in the right direction. There were some significant steps forward, emerging from the synergy of different groups gathered together.

What was my purpose?

Representing UP | understand pain, I was attending SIP 2017 to gain insight into the current thinking about pain from a societal perspective. In particular I was interested in the language being used, the messages being given about pain, and the plans for positive work to drive change. Listening to the talks, being at the meetings and talking to different stakeholders, I was inspired. My passion has been strengthened by what I heard. I know that UP is absolutely on track and my aim now is to contribute to the on-going work, primarily by changing the way society thinks about pain — see workshops here.

The message that I deliver, and that of UP, is that pain can and does change when it is understood thereby empowering, enabling and inspiring the individual to realise his or her potential. The individual is part of society and hence with so many people suffering, this means society is suffering. Drawing together the necessary people to create the conditions for change was the purpose of SIP 2017. From the outcomes (see below), this is what has been achieved.

See the SIP 2017 Impressions here: videos and photos

Who was there?

One of the features of the meeting was the range of people in attendance. For fruitful discussion and action it is essential that stakeholders from the different sectors get together. This is exactly what SIP 2017 created. In no particular order, there were clinicians, academics, scientists, policy makers, MEPs, patient groups and organisations, patient representatives and others who have an interest in the advancement of how society thinks about and addresses pain.

Understand pain to change pain

The right language

The focus was upon the person and their individual experiences of pain within the context of modern society. We all need to understand pain for different reasons, although we are all potential patients!

  • People suffering need to understand pain so that they can realise their potential for change and live a purposeful life
  • Clinicians need to understand pain so that they can deliver the treatments and coaching to people in need
  • Policy makers need to understand pain so that they can create platforms that enable best care

I was pleased to hear and see recommendations for coaching, although the term was not defined. Having used a coaching model for some years, I have seen this bring results, as it is always a means to getting the very best out of the individual ~ see The Pain Coach Programme.

Within the biomedical model, which does not work for persistent pain, the person is reliant upon the clinician providing treatment. We know that this approach is ineffective and in turn, ineffective treatments result in greater costs as the loop of suffering continues. Giving the person the skills, knowledge and know-how enables and inspires people to make the decision to commit to the practices that free them from this loop. People do not need to be dependent upon healthcare to get better. With a clear vision of success and a way to go about it, people can get results and live a meaningful life. This is the philosophy of UP and I was delighted to hear these messages at the meeting.

An issue raised by many was the measurement of pain. The way that pain improvements are captured and the desired outcomes differed between people (patients) and policy makers. The Numerical Rating Score (NRS) is often used, but what does this tell us about the lived experience of the person? Pain is not a score and a person is not a number. If I rate my pain 6/10 right now, that is a mere snapshot. It could be different 10 minutes later and was probably different 10 minutes before. The chosen number tells the clinician nothing about the suffering or the impact. It is when the impact lessens, when suffering eases does the person acknowledge change. No-one would naturally be telling themselves that they have a score for pain unless they have been told to keep a tally. We need to understand what is meaningful for the person, for example, going to work, playing with the kids, going to the shop.

Understand pain to change pain

Valletta panorama, Malta

Steps forward

SIP have issued this press release following the symposium:

‘MARTIN SEYCHELL, DEPUTY DIRECTOR GENERAL DG SANTE, FORMALLY ANNOUNCES LAUNCH OF PAIN EXPERT AND STAKEHOLDER GROUP ON THE EU HEALTH POLICY PLATFORM AT THE SOCIETAL IMPACT OF PAIN SYMPOSIUM’

Mr Seychell gave an excellent talk, absolutely nailing down the key issues and a way forward. This has been followed by with positive action. The SIP statement reads:

‘The European Commission is following SIP’s lead and has launched the EU Health Policy Platform to build a bridge between health systems and policy makers. Among other health policy areas, the societal impact of pain is included as well and will have a dedicated expert group.’

From the workshops the following recommendations emerged:

  1. Establish an EU platform on the societal impact of pain
  2. Develop instruments to assess the societal impact of pain
  3. Initiate policies addressing the impact of pain on employment
  4. Prioritise pain within education for health care professionals, patients and the general public
  5. Increase investment in research on the Societal Impact of Pain

A further success has been the classification of pain

Building momentum

Following this inspiring meeting where so much positive work was done, we now need to take action individually and collectively to get results. I see no reason why we cannot achieve the aims by continuing to drive the right messages about pain. This is a very exciting time from the perspective of EU policy but also in terms of our understanding of pain. The pinnacle of that knowledge must filter down through society, which is the purpose of UP.

To do this we (UP) are very open to creating partnerships with stakeholders who share our desire for change. UP provides the knowledge and the know-how that is needed for results, because without understanding pain, there can be no success. Conversely, understanding pain means that we can create a vision of a healthier society that we enable with simple practices available for all. Society can work together to ease the enormous suffering that currently exists. We all have a stake in that and a responsibility to drive change in that direction.

~ A huge thanks to the organisers and Norbert van Rooij


Please do get in touch if you would like to organise a meeting or a workshop: +447518445493 or email [email protected]

 

12Jun/17

What is pain?

What is pain?

Thoughts from the SIP 2017 Conference

Societal Impact of Pain

“Society needs to understand pain ~ what is pain?

Last week I attended the SIP 2017 Conference in Malta where a meeting of stakeholders deeply considered the issue of pain in society. Pain is a societal problem and the way forward will emerge from considering pain in this light. Significant and exciting steps were taken, which will be covered in a forthcoming article on this site and the UP | understand pain site.

Chronic pain is the number one global health burden. The approaches used for pain are not working. We are seeing the figures increasing over the years as more and more people suffer ~ 100 million people in Europe. Why? The main reason is the misunderstanding of pain that results in unnecessary investigations, treatments that don’t work and low expectations. The predominant thinking remains ‘biomedical’ both in terms of healthcare delivered and society’s expectations. Pain is not a medical problem. It is a public health, or societal issue. We are in it together, all of us. Even clinicians are patients!

Where do we start?

The UP enterprise has a purpose, and that is to change the way that society thinks about pain, hence Understand Pain. From the point of understanding comes new belief and commitment to reach one’s potential. The vision is a world where people understand pain so that the focus is upon the practices that foster a healthy, meaningful existence within the context of the person’s unique life. This emerges from co-operation between the person and the care-giver, working together to achieve results. This is the essence of Pain Coach, grounded in pain sciences, modern philosophy and strengths based coaching, delivering results based on what works.

Pain Coach not only gives individuals unique knowledge and skills according to their needs, but also the all-important know how. I may have the best drill in the world, but without the know-how I will still make big holes in the wall as I try to hang a picture. The Pain Coach coaches the person to coach themselves to overcome pain. Conversely, interventions and medicines are ways to circumnavigate the problem. This is not to say that they do not have a role, however, the person learns nothing about facing it and transforming the experience and therefore will continue the loop of suffering. Only by learning about one’s existing patterns and creating new patterns in line with a vision of success, can the person overcome their pain.

“What do you focus on?

What do you focus on? What language do you use to yourself over and over? What story do you tell yourself? You can make the decision to change your story. What can you control? Your attitudes, your thoughts, your day to day decisions are all yours. What do you do consistently? What do you think and embody consistently? That becomes the story of you. You can choose another script. That is the role of a coach, to help you realise and actualise your choices. To help you make decisions but ultimately you make them and commit to doing positive work to move in a desired direction. You decide the direction.

What is pain?

Pain is part of the whole person state of protect. Pain is poorly related to any stage of injury, tissue damage or indeed tissue state. This is the common misunderstanding, that somehow pain and injury are the same or related. This is not the case and indeed Pat Wall, the father of pain science and medicine, stated this in his 1979 paper. Why then, is this not practiced as mainstream? This is one of the key messages for all.

What are we protecting against? Initially there may be some kind of actual threat such as an injury or disease state, which is rightly interpreted by body systems as dangerous or potentially dangerous.  That’s the whole point of pain in a sense, to be so unpleasant that it compels us to take action. It is a vital survival mechanism without which we have no way to detect actual or potential danger. But, the pain itself remains part of a protect state in light of a perceived threat.

“Pain is a feature of a state of protection

When pain persists, aka chronic pain (not everyone likes this term or wishes to be labelled as such), it means that a state of protect is persistently emerging as the prediction of threat frequents each day. The range of cues or patterns interpreted as potentially dangerous seems to widen and widen so that normally innocuous situations are deemed to be dangerous. This does not mean it has always to be at a conscious level as most of our biology operates in the dark, ie/ there are hidden causes. However, expectation does play a role in as much as when we expect something to hurt it does and often more as we prime, raise the threat level, predict to ourselves that it will hurt and guess what?

Pain is not a constant state. There is no constant state, instead we are continuously ‘updating’, dynamically exploring the environment with the aim of meeting our predicted needs. When a person suffers chronic pain, they will experience a number of episodes in a given day, with a more challenging day featuring more frequent or longer episodes, and a better day featuring less or shorter episodes.

We are changing by design. No moment is the same. Like a foot placed in a river, it is never the same water that passes by. So change is not the question, rather which direction will you go? Which direction will you choose? To coach yourself towards a vision of success? To decide to commit to the practices of well-being? When people realise that they do have a choice it is empowering, inspiring and enabling.  We can decide to reach our potential.

Who suffers chronic pain?

Work is being done to discover more about who would be vulnerable to a chronic state of protect. Players include genetics, past experience (e.g. prior pain, early life events) and gender. One way to think about this is that we are on a timeline, so nothing happens in isolation. When I stub my toe, my existing health and sense of well-being will influence how I react both ‘myself’ and my biology. In other words, if I am very tired and stressed, my experience will be very different to if I were relaxed and happy. Getting the person’s story is key to understanding the context.

You can think of life’s events as priming. From day dot we are shaping ourselves and being shaped, right up until this moment. Every experience and everything learned sculpts us, our body manifest of the sum of all the things we have done and felt. The body systems that protect us evolve and become highly efficient, predicting that the causes of the sensory information mean that danger exists. Actively changing the sensory information with new practices, new habits and patterns of thought and action take us on different path. A path onward in a chosen direction. Our attitude to change and belief in our own abilities are both key factors — and both can change in themselves!

“Pain is whole person — it’s not my back in pain, I am in pain. Me

The perception or experience of pain is coloured by many factors in that person’s life, including past experience, beliefs, context, environment, actions (current and predicted), emotional state, attentional bias (what I am focusing upon), other people and more. Pain undoubtedly emerges in the person. In other words, it is the person who suffers pain, not the body region where it is felt. Much like it is the person who is thirsty, not their mouth.

In summary

  • It is the whole person who feels pain
  • Pain is part of the way we protect ourselves in the light of a perceived threat
  • Pain can and does change
  • Understand pain to change pain
04Apr/17
UP & CRPS UK London Marathon

Not long now

Not long now ~ with only a few weeks away before the London Marathon, I must admit that I am getting rather excited. It has been very worthwhile putting in all the miles with the aim of really enjoying the day.



One more long run to do this weekend and then I will be tailing off as advised by my team of trainers and co-runners. Yesterday a friend asked me about these 20+ milers and how you keep going. I never imagined that I would ever be running for 3-4 hours, and certainly never thought I would be popping out for a ‘quick 10 miles’. I have found that the time passes quickly once I get going but really focusing on what is going on around me, looking up, coaching myself to remain relaxed and feel inspired by the encouragement I receive.

Anyhow, the really important bit is raising money and awareness of two key projects tackling the number one global health burden: pain. The charity CRPS UK and the social enterprise UP | understand pain both envision a world of people understanding their own potential to live well and to overcome their pain.

THE PROBLEM OF PAIN

The costs of chronic pain to individuals and society are vast. Loss of earnings, loss of productivity, the expense of treatments that often don’t work and above all the immense suffering. This need not be the case if society really understood pain. By understanding pain, individuals would know where to put their efforts to get better from the outset of a pain problem, whatever the cause, and healthcare would deliver effective care.

The thinking on pain still largely resides in out-dated models. This means that individuals become reliant upon passive treatments, are subjected to endless unnecessary investigations and are exposed to the wrong messages about pain that keep expectations low and purport fears and worries that only increase suffering.

“Pain is poorly related to injury, tissue health, structures in the body, biomechanics or pathology

Our journey to understand pain began when two remarkable men created pain medicine. Pat Wall and Ron Melzack changed the landscape forever and have inspired a generation of scientists and clinicians to ask questions about pain and discover the answers: what is pain? What is pain for? What can we do about pain?

Our knowledge about pain has increased enormously but there is a long way to go before our current understanding is practiced day to day in society. This gap is a significant societal issue, and one that UP will bridge with the forthcoming education programmes and an online resource that is this very website. The UP site will be re-launched this year, packed with information that people can use to understand pain.

WE HAVE AMAZING POTENTIAL

Humans are incredible. We are designed to change, adapt and learn, so tapping into our natural resources is one of the most potent and enabling things we can do. Consider all the achievements of mankind, which largely boil down to a clear picture of success, an ability to focus upon a plan of action, taking action and learning along the way when facing challenges. Together with a dose of determination, courage and belief, we can achieve by always being the best that we can be: ‘I will be the best me today’ is not a bad mantra to have!

The challenge of pain is no different. The programmes that UP will run for people in pain and for clinicians are all based on how we can be successful, how we can chose the positive route, how we can achieve our best. This is by focusing on what we do well, how we do it and how we can do more of this whilst acknowledging and seeking to improve in other areas.

So this in my mind drives my desire to do my best in training and on the day on 23rd April. Having said that, I will be pleased to see some familiar faces in the crowd on the way round! Or even faces I don’t know who want to support our causes. Pain affects so many people across the globe for so many reasons. Together we can change this by changing the way society thinks about pain and our expectations. Let’s expect to do well and live well.

Please support us here by donating whatever you can and join us for a quiz night before the run on Thursday 20th April in Surbiton — see here.

Thanks!!

27Mar/17

Charity quiz night

Charity Quiz Night

On Thursday 20th April we are having a charity quiz night at Wags N Tails in Surbiton to raise money for CRPS UK and UP | understand painclick here for the event link — please come along and support us! 

Richmond is running the London Marathon this year to support CRPS UK and UP — please donate here

Chronic pain is the number one global health burden

Chronic pain costs us the most of all the health problems that exist. One only has to think of all the conditions that are painful and consider the expenditure on investigations and treatment. This is in addition to the loss of productivity. Some 20% of the population suffers chronic pain, including 1:5 children, which begins to provide insight into the immeasurable suffering. People from all corners of society are struggling to understand why they are in pain, do not know what they can do and feel isolated as their plight continues. This does not need to be the case.

UP | understand pain

At UP, we have a vision of a world where people understand pain and know what they can do to live well. This begins with changing the way society thinks about pain, truly understanding the facts, in which case they would know that there is a way forward. We are constantly changing and learning meaning that we have the resources and the potential to get better. People need to know how.

UP is to be re-launched this year as a social enterprise that will deliver the latest knowledge about pain and how it can be applied. The know-how is vital as are the skills of well-being and self-coaching. The programmes will be delivered to people suffering pain and to healthcare professionals who work with people in pain. This includes trainees who are the new generation of clinicians and therapists. We also plan to take our message to the policy makers to create changes ‘top down’.

CRPS UK

The CRPS UK charity supports people who have been diagnosed with complex regional pain syndrome (CRPS — sometimes called RSD) and their families. The most recent diagnostic guide is the Budapest Criteria.

CRPS is poorly recognised and understood. This means that diagnosis and the right treatment can be delayed, resulting in on-going suffering. The pain of CRPS can be unimaginable with the impact upon the person’s life being enormous.

We can and must do better with CRPS and all pain conditions. The right messages early on and the right actions taken by both the individual and clinicians will make a huge difference.

The work being done by both CRPS UK and UP will be instrumental in the forthcoming changes that must happen in society. Pain is a public health issue of the utmost importance — the costs and the suffering. Pain must be addressed in this way, which is what we are doing at UP. This massive problem affects us all and we can do so much to transform the issue.

Please support our work by coming to the charity quiz on Thursday 20th April or donate here.

 

18Feb/17

Why am I running the London Marathon?

Why am I running the London Marathon?

We are 10 weeks away from the London Marathon and I am getting excited about the day. The training is going well, and I am using others experience and knowledge as a yardstick, reaching 16 miles so far. A bit more nudging in March and I’ll be set to join the thousands of other runners, coursing round the great city of London.

So why am I doing this? The answer is simple. To raise awareness and money to address the biggest global health burden, chronic pain. It costs us the most economically but of course the amount of suffering worldwide is immeasurable. This must change and we can change it by shifting our thinking to be in line with what we know about pain. With an understanding of pain, individuals realise their potential to overcome their pain and live meaningful lives. This is achievable, and in this day and age we have the means to reach across the globe to give people the knowledge and skills. This is the story of UP | understand pain, which was co-founded by myself and Georgie as a pain awareness campaign. Now we have big plans to take the project to another level to achieve our aim of changing the way society thinks about pain.

Complex Regional Pain Syndrome (CRPS) can be a terribly disabling condition, characterised by intense pain. Many people have not heard of CRPS and within healthcare diagnosis is often delayed. This is a problem because like most conditions, early identification allows for treatment to begin. The treatment must be based upon the person’s understanding of the signs and symptoms, for there is an understandable fear that drives on-going protection. Therefore, as with any injury or pain problem, the early messages must be right and make sense.A person’s belief drives their behaviours and subsequent thinking, so a good working knowledge of pain is vital ~ understand pain to change pain.

CRPS UK gained a place in this year’s London Marathon, and having spoken twice at their conferences and being in regular contact, I ‘volunteered’ to be the runner. I was very excited to be chosen and gratefully accepted, which is now why I am out in the Lycra every other day (I will not be posting a picture of that!). CRPS UK is a charity dedicated to advancing the understanding of the condition and supporting people with CRPS. The people involved are doing incredible work to raise the profile and have achieved so much through their dedication. Please visit their website here.

You may be someone suffering chronic pain or know someone who is regularly in pain. Most of us do know someone and can see the effects upon their life. This is not just pain from backs and joints but pain related to cancer, heart disease, arthritis, irritable bowel syndrome, headaches, migraines, rheumatological diseases, pelvic pain and many other conditions that hurt. The work being done by CRPS UK and UP aims to change this and provide resources and training that gives individuals and society a way forward, to overcome pain and live well.

Please show your support here and donate generously

Thankyou!!

30Jan/17

CRPS Diagnosis

CRPS Diagnosis

CRPSComplex Regional Pain Syndrome (CRPS) is a collection of signs and symptoms that define this particular condition. A syndrome according to the Oxford Dictionaries, is a ‘group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms’. Therefore, we can clump together any set of symptoms and give it a name, which is really what has happened over the years in medicine. The important point is that when we use the term, we should all know what we are talking about and know what we should look for to make a diagnosis. In other words, a set of guidelines.

The Budapest Criteria delivers guidelines for CRPS, which you can read about in this paper by Harden et al. (2013). The clinical criteria (see below) acknowledge the sensory, vasomotor, sudomotor/oedema and motor/trophic categories that really highlight the complexity of CRPS. Pain is often the primary concern, with people describing their incredible suffering in a range of graphic ways. However, it is not just the pain that causes suffering but the way in which the life of the person changes together with their sense of who they are and their sense of agency seemingly lost. One of the roles of the clinician is certainly to help restore that sense of who I am, a construct that is built from many of life’s ‘components’.

Budapest Criteria

1. Continuing pain, which is disproportionate to any inciting event

2. Must report at least one symptom in three of the four following categories

  • Sensory: Reports of hyperalgesia and/or allodynia
  • Vasomotor: Reports of temperature asymmetry and/or skin color changes and/or skin color asymmetry
  • Sudomotor/Edema: Reports of edema and/or sweating changes and/or sweating asymmetry
  • Motor/Trophic: Reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)

3. Must display at least one sign at time of evaluation in two or more of the following categories

  • Sensory: Evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure and/or joint movement)
  • Vasomotor: Evidence of temperature asymmetry and/or skin color changes and/or asymmetry
  • Sudomotor/Edema: Evidence of edema and/or sweating changes and/or sweating asymmetry
  • Motor/Trophic: Evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)

4. There is no other diagnosis that better explains the signs and symptoms

Importance of diagnosis

A diagnosis made in the same way, based on the same criteria means that clinicians, researchers and patients alike are all discussing the same condition. This may seem pedantic but in fact it is vital for creating a way forward. Clinicians mus know what they are treating, patients must know what they are being treated for and researchers must know what they are researching. Sounds obvious but let’s not take it for granted. So the Budapest Criteria has pointed all those with an interest in the same direction. Consequently we can focus on creating better and better treatments.

As with any painful condition, the start point must be understanding the pain itself. The following questions arise that we must be try to answer:

  • why am I in pain?
  • why this much pain?
  • why is it persisting?
  • what influences my pain?
  • what do I, the bearer of the pain, need to do to get better?
  • what will you do, the clinician or therapist, to help me get better?
  • how long will it take?

New thinking, new science, new models of pain over the past 10 years has advanced our knowledge enormously. Understanding how we change, how our body systems update, how we can make choices as individuals, and the practices we can use to change our pain experience to name but a few, create great hope as we tap into our amazing strengths and resources as human beings. Detailing the treatment approaches is for another series of blogs, but here the key point is that the first step in overcoming pain is to understand it. It is the misunderstanding of pain that causes erroneous thinking and action, which we can and must address across society — pain is a public health issue. Chronic pain is one of the largest global health burdens (Vos et al. 2012). It costs us the most alongside depression, and I believe that this need not be the case if and when we change how we think about pain, based on current and emerging knowledge.

“The first step to overcoming pain is to understand it”

upandrunThis is the reason for UP | understand pain, which we started in 2015 with the aim of changing the way people think and then approach their pain, realising their potential and knowing what they can do. We are about to launch the new website that is packed with practical information for the globe to access online. Alongside this we have plans to create a social enterprise that will purport the same messages, coming from the great thinkers and clinicians who are shaping a new era in changing pain.

In April I will be running the London Marathon to raise awareness of the work of both UP and CRPS UK. You can support the work that both are doing to change pain by donating here

Thank you!

 

29Jan/17

Pills, injections & surgery don’t teach you how to live

Pills, injections & surgery don’t teach you how to live ~ pain is a public health and social issue
Important Message by Patrick Denker | https://flic.kr/p/a9iUAG

Important Message by Patrick Denker | https://flic.kr/p/a9iUAG

In chronic pain, everything changes. The way you think, feel, move and body sense are all impacted by this on-going state of protection that keeps you in a defensive mode. Even the world looks different as perceptions of the environment are distorted (Ref). The changes that we live and experience have biological underpinnings that have and continue to be studied. Clarifying what is happening at this level aims to give rise to new clinical approaches, both pharmacological and non-pharamcological.

This short article is by no means anti-medicine or anti-surgery because these methods have their place. In that place they must remain, viewed as an option within an overall plan or programme that delivers the outcome of overcoming pain. My point is simply that understanding pain means that we realise that explanations relying upon tissue structure or pathology do not hold up. Pain is not a structure and pain cannot be seen on any scan or x-ray. Pain is a lived experience emerging in a person, which is a culmination of multilevel neuroimmune processing and consequent prediction of the existence of a possible threat. Pain exists within our perception of the current moment that is informed by context and past experience (priors): what we are thinking, what we are doing, who we are with, where we are.

Only I can experience my pain under these circumstances, with some ‘components’ being conscious and many being subconscious. For example, I know that I am anticipating pain in the form of a thought: ‘I expect my back to hurt when I put on those shoes’. Yet I do not know and cannot ‘feel’ the activity of my brain, instead living the biological processing as a conscious experience of what it is like to exist in this moment. Here if course we are contemplating consciousness and what it is like to be me, and we do not know how biology becomes this experience.

Pain emerging in the person makes it as complex as the person; and we are complex! Equally, pain relief or achieving a pain frePain Coach Programmee state is as complex. Neither are permanent states as we are continually changing as our body systems and models of the world update. Our ability to shape our body systems with experience creates such opportunity and with that hope. But it is the individual who shapes their systems by making choices based on understanding. This is why understanding pain is so important as a starter. By this I don’t mean knowing all the chemicals and receptors, instead a working knowledge of pain that can be used practically at any given moment so that the person knows what to think and do. In essence, they learn to coach themselves, which is the basis of my Pain Coach Programme.

There are many influences upon the pain experience itself as well as the likelihood that we will feel pain. Unsurprisingly these include stress, anxiety, thoughts, emotional state, environment, other people, fear, context, memory, tiredness and past experience. The person can understand these influences and develop practices that lessen and ease their impact, learning new habits that are pointed towards health and happiness. This is a significant part of the programme of getting and living well. Pills, injections and surgery do not provide such a learning opportunity. Indeed there maybe relief in the short term and there is a potential role here, yet we are interested in long term change in a desired direction.

Suffering chronic pain has many effects upon the person. Certainly their biology has adapted and changed meaning that they can be in a protect or vigilant state more often, and therefore more reactive with emotions and behaviours. Body sense often changes resulting in altered movement patterns, which in turn cause issues navigating the world as well as providing sensory information that can be continually interpreted as evidence of a threat. Recall that pain is in the face of a perceived threat: more threat = more likelihood of pain. Learning the skills of wellbeing together with specific training sculpts biology towards that underpinning lived experiences of health and wellbeing. Again, pills, injections and surgery do not provide such an opportunity.

Overcoming pain to live a meaningful life requires understanding, effort, practice, resilience, motivation and the right attitude. Everyone has the ability to use their strengths and values to motivate actions (thoughts and acts — remember that a thought is an action) that steer change in a positive direction. It is realising that we can choose. We can choose the attitude we take towards a challenge, and the challenge of chronic pain can be one of the greatest faced by an individual.

Rightly so, an argument has been put forward that pain should be considered an issue of public health. Pain is certainly a societal problem, and in looking at it in this way, we are more like to be able to address the issue that costs us an extraordinary amount of money each year. Financial cost is one thing, but the amount of suffering across the globe and in particular in poorer regions, is another. We are compelled to think differently and we can to do this with the knowledge that we have about pain emerging from science, social and philosophical fields. This is a desperate situation needing collaborations between countries and organisations. Fundamentally, the picture of the modern pain epidemic can be changed, beginning with changing society’s thinking about pain. This involves practical and engaged education projects.

Pain education has been trumpeted and righty so. However, there has been a focus on the neuroscience of pain, especially the role of the brain to the point that the brain is described as somehow being separate from the person. Very contemporary philosophical thinking together with neuroscience has nudged us towards the whole person and viewing pain as a lived experience emerging in the person. This allows us to consider a range of ways to educate the person about how they can change their pain, overcome their pain and live a meaningful life. Of course this is always work in progress and it continues with great gusto. The emphasis on chemicals and receptors has moved on. Whilst interesting to know the microbiology of pain, what the person on pain really needs are practical ways of changing their pain in that moment.

Reflecting on the points made, one can see that the biomedical approach to pain is limited by the fact that pain is a social and public health problem, not a medical problem. Some of the recent best thinking about pain has come from historians, public health experts, English scholars, philosophers, artists, and poets. People ask me how they can learn more about pain. The answer lies in listening and looking at society and people who live the experience. Pain and suffering are ubiquitous. They do not live in a book and certainly not a medical textbook!

So what next?

UP | Understanding PainAt UP | understand pain we are working on several projects that will deliver the latest information and thinking about pain to society. Very soon the new UP website will be launched, giving us an online reach across the globe, allowing people to access this information. UP is a social project, working to evolve the way societies think about pain so that suffering can be reduced. With pain being such an individual matter, when only I can feel my pain that is defined by my knowledge, beliefs and experiences to date, the projects must be culturally sensitive. This does not mean going about it carefully, indeed we need to be shouting the current understanding of pain from the rooftops, instead referring to the fact that there is a significant cultural dimension that blends with all other dimensions of the pain experience.

For example, one place that I intend to have an impact is Cambodia (I will explain my reasons in a later blog). The first steps have to include a deeper insight into the current thinking and what factors and beliefs underpin that thinking. We know that it is not simple to replace an existing model with another, even if the latter is more logical and accurate.

Delivering skills and knowledge to people suffering and to those providing the care in principle is straight forward. Much of what is delivered is straight forward, understandable and does not rely on expensive or complicated equipment. The Pain Coach Programme is easily taught and scaled for example, not only giving people what they need to point themselves towards being healthy but creating habits from which emerges healthy, meaningful living. In so doing, pain becomes less and less of a feature, simply because the person is engaged with their life, feeling that sense of being able to make a choice, having meaningful interactions with others, resulting in fulfilment.

Pain is a social issue, a public health issue. Pills, injections and surgery will not solve this problem and in fact can be the cause of increasing reliance on such measures, meaning the individuals have no understanding of what they need to do to get better. Medical interventions do not teach people how to live and whilst there maybe a place for this kind of relief, it must be within the bigger picture, a model of that person’s life that includes all dimensions: e.g./ social, psychological, cultural, gender, biological. The risks of using medication have been well publicised in terms of opioids and this remains a significant social issue.

It is the person who feels pain, the whole person, not the body part. Society’s thinking can evolve in line with what we really know about pain and make a huge impact upon the vast amount of suffering that comes at such great expense. This starts now.