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.
Steps forwards at SIP 2017
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.
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.
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.
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:
- Establish an EU platform on the societal impact of pain
- Develop instruments to assess the societal impact of pain
- Initiate policies addressing the impact of pain on employment
- Prioritise pain within education for health care professionals, patients and the general public
- Increase investment in research on the Societal Impact of Pain
A further success has been the classification of pain
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 pai[email protected]