Category Archives: UP

31Aug/18

Fibromyalgia causes Kirsty Young to take a break

Chronic pain, Fibromyalgia, Pain, Uncategorized, understand pain, UP, upandsing, , ,
Kirsty Young on front page of The Guardian takes a break

Kirsty Young on the front page of The Guardian today

Fibromyalgia is a painful condition that may affect more people than is realised

It is unusual to see chronic pain hit the front pages, but today Kirsty Young announced that she is to take a break from Desert Island Discs because of fibromyalgia. The popular Radio 4 presenter says that she is likely to be away for a number of months.

Fibromyalgia is predominantly a painful condition, but accompanied by a range of other issues and characteristics. These can include headaches, migraines, irritable bowel syndrome (IBS), jaw dysfunction, pelvic pain, anxiety, fatigue, sleep disruption, the so-called brain fog (poor concentration, memory and ability to think clearly), depression and perfectionism to name but a few. The pain itself can often be widespread. Together this makes for a miserable time, frequently with great suffering due to the impact upon the person’s life.

Fibromyalgia and the neuroimmune system

The debate about fibromyalgia continues. Once ignored, there are still quarters who doubt and contest the existence due to a lack of biological markers. Slowly this has been changing and we know that there are likely to be neuroimmune changes that underpin the range of sensitivities.

With the neuroimmune system being very responsive to the way we live, think and act, this explains why many people who suffer fibromyalgia begin their story at, or soon after a period of emotional turmoil or stress. This need not be something huge in life, instead the drip, drip, drip of perceived pressure, the perfectionist need to reach unobtainable levels of performance, the self critic that triggers biological protect states and a lack of self-acceptance are easily enough to trigger such an episode. They are often slow-burners over time when you look back in the story. Each person has their own story that we must hear.

This is indeed why the figures of children and youngsters currently suffering is so alarming. When you listen to the narratives of people, often women, who suffer fibromyalgia, the patterns emerge. The same patterns that we are seeing in these kids who are being encouraged to be self-focused, to be competitive, to get top marks etc. And at a time when their biology is being sculpted and so vulnerable, this is a disaster on the way unless we wake up and changes the way society is going. I’m not even touching on the contribution of social media either!

Let’s be optimistic…because we can

As with other chronic pain problems, the mainstream thinking is out-dated and rather glum. Tacked onto the end of most articles are the same old ‘treatments’, wheeled out as an after thought, with a bit of a yawn. Exercise, talking therapies, medication (usually that’s first — as if dulling the symptoms will ever teach you anything about overcoming the problem!), relaxation and mindfulness are the common ones. Yes, they can be helpful, but there is so much more to it!

The first step is to understand fibromyalgia and the pain and the other symptoms. There is an over-arching biology at play, a level of sensitivity that is manifesting as the lived experience of the person. With understanding we shed fears and limiting beliefs, and put energies into focusing on the steps to overcoming the challenges. We need a direction: what is your picture of success? What do you want, I ask people who come to see me, asking them to frame it in terms of what they want, not what they don’t want (I don’t want this pain is a common start point that soon becomes, I want to go to work, I want to play with the kids, I want to sleep etc etc.).

The clear picture of success is a daily reference point as you create new habits to change state. We seek to generate the best states as often as we can: pleasure, joy, resourceful, excitement, love, compassion, gratitude and many more. We can do this in a number of ways including focus, movement, breathing, a shift in approach and visualisation. These states are accessible to all because they exist in us and are the way we build wellness; and there’s one thing we need to build when we suffer chronic pain, and that’s wellness.

What is pain?

This is a huge question so I shall be to the point here. Pain is all about protection, and forms part of the way we survive. The brain is only interested in survival, so if there is an actual or possible threat, we will respond just in case. Of course we are more than a brain and this amazing organ needs a body to act upon the world. Hence we must always think about the whole person, which is the purpose of the biopsychosocial model. It is the person who suffers, not the body part or system.

Pain is well related to the perception of threat, but is poorly related to tissue damage or state. We have known this for many years, yet much of society still acts according to outdated thinking. Many people and much of healthcare continues to try to explain pain by pictures on a scan. This is not the way it works.

Pain is very much tied into how the person is in their life and their style of life. How do you do life’s challenges is usually reflected in how you do pain and the choices you make. They may not be the best choices and could well need a new approach based on truly understanding pain.

Survive mode ~ constant protection

One of the features of fibromyalgia is the constant state of protect. The systems that look out for us maintain a level of alert and increasingly the world looks more and more dangerous. Remember that we work on a just in case basis. 9 times out of 10 there is no lion behind the bush, but there may be, and that’s all we need to trigger another defensive reaction. This is done automatically in the main, orchestrated by the sympathetic nervous system (fright or flight).

So, one primary job is to restore some balance and the ability to discriminate between real and possible and no danger. As a clinician I share the knowledge, we practice certain skills together and then the person takes them into their own world to use independently. This creates new experiences and reference points for moving on. At all times we are keeping our picture of success in mind — am I thinking and acting in line with my picture or am I being distracted?

Moving forward

The firm grounding of understanding forms a foundation to create a daily practice of rituals and new habits to build wellness. Shifting out of protect to other states is like changing gears in a car. We have to coach ourselves in each moment, nurturing the positive states that biologically are congruent with survival, and change state when we are suffering. Of course there will be a reason why we are in a suffering state and this is not to be ignored. There is a need to be met, which could be reassurance to self, or a need to address a difficult emotion, a need to nourish the body with movement, or more often a range of needs. With understanding and practical tools we can begin to consistently meet our needs and forge a way forward, transforming our suffering moment by moment, day by day.

We are a whole. Each moment is made of thoughts, feelings, perceptions and actions unified as our conscious experience. That is all we have as our biology is in the dark and there are many hidden states that we do not have access to. Same with the brain that has to guess what the signals flowing in may mean. The mind is best thought of as embodied, which has several important implications.

Firstly, the way our body is experienced impacts on our ability to think, decide, and remember. All are grounded in our physical presence., which we must care for and nourish in a compassionate way. Secondly, our body is how we enact our thoughts, feelings and decisions, so it must work for us. Movement is key for survival and hence anything that could affect our ability to act in the world is deeply threatening. And thirdly, for these to happen we must be connected with our bodies. Many people appear to be disconnected or ‘avoid’ their bodies because they don’t like how they look or feel. Simply, you cannot address this unless you are engaged with your body.

Understand pain (and your condition) to understand your potential

I wish Kirsty Young well. It can appear to be a tough road, especially when many of the messages are doom and gloom. However, I would say that we are now in a time of disruption; disrupting this kind of dated thinking. Disrupting is what I am doing (Understand Pain social enterprise), because we do not need to suffer the way in which we are. We have many ways to reduce and transform suffering.

There are numerous practices and tools that can support and encourage a way forward for each person, but they need the know-how. That’s the key bit. The practices must address all the dimensions of a pain experience. And this is why I brought strengths-based coaching together with pain science using the true biopsychosocial model. To use what we know about pain with an approach that gets the best of people so that they can achieve their picture of success. Tools are just tools, but with know-how we add wisdom to their use to get results.

On we go!

For more on The Pain Coach Programme to manage and overcome pain, see here 

Understand Pain Social Enterprise 

07Oct/17
Royal Parks 1/2 Marathon

Why I run

Chronic pain, Complex regional pain syndrome, CRPS, understand pain, UP, upandrun, , , , , ,
Royal Parks 1/2 Marathon

Team shirts for Royal Parks 1/2 Marathon

Why I run

Recently I was chatting to a good friend who asked me why I run. I had to pause and think because naturally I don’t class myself as a runner. Instead, I am someone who goes running.

Whether I am a runner or not is not particularly important, however the purpose is. I used to go out regularly just to keep fit. 30-40 minutes would suffice, I would feel pretty good afterwards, but it was often a bind beforehand. Then the Royal Parks 1/2 Marathon 2016 was on the agenda so I had to get a bit more serious. Somehow it became more enjoyable. There was a goal and a reason. The reason was to raise awareness of the problem of chronic pain and to raise money for UP, understand pain.

Purpose and mine as an example

Having a purpose or a meaning is known to be a key ingredient for a healthy and happy life. You may or may not know what it is, so it’s a great idea to write it out. We all have a calling, or as Seth Godin says, a ‘caring’. We can have a number of these in relation to family, work and other activities in life.

My purpose, which you could also call my ‘why’ in Simon Sinek’s language, is to inspire as many people as I can, to live well and overcome pain. This is by directly working and coaching with people who suffer chronic pain to date, and delivering The Pain Coach Workshops to clinicians and therapists who choose to become inspirers, educators, enablers and encouragers.

Here is Richard Leider on purpose ~ TEDX talk

UP & CRPS UK London Marathon

Next came the opportunity to run the London Marathon 2017. I was selected to represent CRPS UK, joining together with UP, and realised the excitement of taking part in an incredible day. The experience of preparing for a marathon was something I can now look back upon with pride. Somehow you manage to fit in the regular and long runs. Undoubtedly this required the support of the people close by. The 20 mile plus efforts would consume a Saturday with the recovery on return usually consisting of walking like John Wayne accompanied by much grunting and groaning until the next day.

What has running done for me?

There have been a number of effects of long distance running beyond the obvious fitness. At a time when I was driving understand pain onwards, the regular and intense exercising helped me to focus. In part this was from organising my time, prioritising and concentrating on completing tasks. There was no choice, because I had to fit in the long runs, but now this has become a habit. We have finite time and so wise use is important to me.

The ability to focus comes into its own when you are some miles into the run and your thinking turns to stopping, the pain, and plenty of other reasons why continuing is a bad idea. To keep going and ‘just run’ as my good (running) friend advised me was gold. You can and do just keep going, suddenly inspired by something you choose to turn your attention to, fortifying the attitude I describe below, which we can take into other arenas of life.

The most significant opportunity was building upon the ‘you can’ approach to life. Building up the miles with an attitude of ‘I can do this’, keeping my attention on a picture of success that I clarified from the start and following principles that take me in that direction resulted in completing the marathon. Looking back now, this was a mindset that pervaded the UP ethos and how grown immeasurably since. The more you work that approach, the more the approach works.

you can

Undoubtedly, focusing on one’s strengths means that you get results together with the development of clarity and resilience to face challenges that crop up. This is no different with a pain challenge to overcome, which is why I encourage people to adopt the strengths approach. It works if you have a purpose, principles to follow and a picture of success to work towards based on living a healthy and happy life.

So this is why I run. Not to keep fit — that is a great side effect and not at all separate from the way we feel and think; we are whole unique individuals — but to nurture and build an approach to life that is about possibility and fulfilling potential.

approach to life: problems or possibilities?

Tomorrow I run the Royal Parks 1/2 Marathon in London. This was a great day last year and I am very excited to be doing it again. I am running to raise awareness of CRPS UK and understand pain and the work we are doing to address the No 1 global health burden ~ see below. Please support my work. Chronic pain affects each and everyone of us either because we suffer, know someone who suffers or pay towards the problem via taxes, insurance premiums and long NHS waits. This can change. This is our work at understand pain, this is my purpose.

11Sep/17
Pain Coaching to overcome chronic pain by living

You are supporting meaningful change in society

Chronic pain, understand pain, UP, , , , ,

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

Complex regional pain syndrome, CRPS, CRPSUK, understand pain, UP, , ,

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

Chronic pain, CRPS, CRPS Budapest Criteria, CRPSUK, understand pain, UP, , ,

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

chronic back pain, Chronic pain, Pain in society, Societal Impact of Pain, understand pain, UP, , , ,

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?

Chronic pain, Pain in society, understand pain, UP, , ,

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

Chronic pain, Complex regional pain syndrome, CRPSUK, understand pain, UP, , , , ,

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!!