Tag Archives: pain in society

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