We all experience pain at various points in our lives and for many it is short lived, the result of a knock or bump, a scrape or scratch. But persistent pain is a different matter and can blight the lives of those suffering from debilitating conditions such as fibromyalgia, arthritis and various nerve pain conditions, known as neuropathies. The phenomena of pain presents a huge problem for the medical community. How do clinicians assess and treat those living with pain when the experience is so personal and unique to each of us?
At Durham University’s Wolfson Research Institute for Health and Wellbeing (WRIHW) Professor Paul Chazot has been engaged in trialling a range of interventions as part of the Pain Academy in the hope that ‘pain livers’ can become more empowered to manage their pain with less reliance on biomedical solutions. At the heart of this research is the use of arts practices through schemes such as social prescribing, where doctors refer patients to regular therapeutic activity sessions led by artists, writers, musicians, dancers and so on.
Chazot’s specialism is pharmacology and in particular the identification, characterisation and validation of novel drug treatments for the treatment of major acute and chronic central nervous system pathologies. While recognising the efficacy of drugs to suppress the pain pathways, Chazot is concerned at the dangers of overprescription of current and long-term prescribing of pain reduction medicines.
Pain-relieving drugs in common usage, such as opioids, affect brain function and over consumption can lead to poor health, and even death. Long-term use can also increase illness through infections and cancer, and change the balance of sex and other hormone functions. Chronic pain cannot be cured, so Chazot believes other solutions must be found.
Live Well With Pain
These ideas were brought into play at a ‘Live Well With Pain – Beyond Biomedicine Health celebration’ event held at the University of Durham recently where ‘pain livers’ took centre stage alongside Chazot, fellow academics, members of the medical profession, students and various arts practitioners.
Dr Frances Cole, a former GP based in North Yorkshire, who has been working closely with Chazot for over a decade, spoke of the challenges facing GPs. Many GPs are under immense pressure and are often poorly informed about chronic pain, which can lead to the prescribing of a cocktail of incompatible drugs, called ‘polypharmacy’.
In 2021 NICE (the National Institute for Health Care and Excellence) published guidance recommending restrictions in relation to prescribing opioids, but the north-east and Cumbria remain hotspots for the overprescription of opioids, so much work remains to be done. Both Frances and Paul believe that pain should be recognised as a priority disease by the government.
In 2018, in cooperation with the WHO, an IASP (International Association for the Study of Pain) Working Group developed an international classification system for chronic pain. This was the first time that chronic pain was recognised by WHO as a specific disease in its own right, and has helped lay the ground for a new approach.
Building on decades of experience
Cole’s work in the field goes back three decades. She developed the first UK primary and community care pain rehabilitation programme based on cognitive behavioural therapy principles in 1996. She then went on to develop a pain health needs assessment tool that won an NHS Modernisation award in 2005 and gained an NHS National Clinical Leaders Award in 2011. She is also a past chair of the British Pain Society Pain Management Programme Special Interest Group and has authored the self-help books Living Well With Pain and Overcoming Chronic Pain.
More recently Cole has focused on working with others to co-create web resources for clinicians and for people with pain. These are designed to provide positive help, lessening reliance on opioids and other medications, with their unsafe side effects. Of particular interest is the 10 Footsteps To Living Well With Pain programme. This training programme achieved increased GP confidence and a reduction in prescriptions of high dose opioids (in the test practice in the north-east) to zero in less than two years, despite the pandemic. The programme won the Academic Health Science Network ‘Bright ideas in health’ award in 2021.
In recognition that GPs are generally the first port of call when aches and pains manifest in various parts of our body, Dr Cole issued an appeal to the medical establishment during her address at the celebration event.
“We in primary care can connect and help shape more personal care – less reliant on medicines and more linked into social prescribing and other self-care resources within communities. It is the knitting it together that is the challenge. People with pain and practitioners – clinical and non-clinical – can achieve that working together as the journey has already started.”
It is most heartening to hear this kind of joined up thinking that allows for a holistic psycho-social approach to those living with pain. But we still need a big shift in government policy in order to realise the transformation envisaged by Cole and her colleagues, where costly prescription drugs are no longer deemed the best quick fix.
Cole is also one of the people behind the Footsteps Festival, a celebration of ‘living well with pain’ which was co-organised with a group of pain-experienced people from across the country. The Footsteps Festival was borne out of personal passion to support people who were trying to work out how to live well with pain.
“Some of us were wrestling with our own journeys to try to live better with the pain that we were experiencing. Some of us were working with people in pain and learning or researching things that were clearly helping. But all of us felt united in the sense that the information, research and tools were hard to find. We wanted to change that!”
The Covid-19 pandemic made online tools (such as Zoom events) more accessible, and so Footsteps Festival began with a trial run at the end of 2020, followed by a launch in 2021. The Footsteps team recognised that the pain journey is personal and complex, but hoped that an online festival format could help people to talk about pain and find emotional support because, as they say, “you are not alone”.
Chris Penlington is a clinical psychologist who has been working in pain management since 2001, first for a local NHS Trust and now for Newcastle University where she specialises in orofacial pain. Chris has worked with hundreds of patients to support them in self-managing their pain. She provided an overview of the Footsteps Festival emphasising the importance of co-creation and democratic principles which puts pain-experienced people at the centre of decision making. Activities such as online singing groups led by Opera North, a reading club, crafting and ‘zentangling’ were among the regular offerings for festivalgoers. Meanwhile, there is an ongoing monthly ‘journal club’ open to anybody with an interest in pain, and a weekly ‘create and craft’ group which is run by lived-experience volunteers.
Arts Council involvement
A subsequent development has involved Arts Council England National Portfolio Organisation Balbir Singh Dance Company working closely with Chazot, Live Well With Pain and Leeds Beckett University as part of a Fuse Health award-winning project called ‘Unmasking Pain’ which sought to find new forms of expression for people experiencing pain to tell their story.
Through a series of workshops, people participated in various creative activities from dance and drawing to puppetry, music and nature walks. For example, working with a tabla player and other musicians, participants chose sounds and music that inspired or relaxed them. These were then turned into their own personalised recordings.
In another workshop, a puppeteer shared handmade puppets of each of the participants who held conversations with themselves through their puppets. Artists also shared their own experiences of living with pain and their creative journeys of how they learnt to tell their stories, inspiring participants to find their own voice and unlock their own creativity.
Classical Indian dancer Devika Rao joined the celebration event, demonstrating her approach to befriending pain, taking us on a journey from ‘hand to eye to mind and rest’. Singh explained that the use of metaphors and narrative was an important aspect of the pilot, giving a shape and colour to the experience of pain.
Some participants and artists had a mask made of their faces at the beginning and end of the project to capture changes in facial expression as part of measuring impact. Meanwhile Chazot’s team used state of the art technology (for example, thermal facial imaging) to map the changing morphology and physiology of participants’ faces as blood flow increased according to arousal, engagement and enjoyment levels.
Across the board the findings showed that the need of all participants for pain medication decreased or stayed the same during the project. It also supported all of them to become more open to alternative pain management in the future, a crucial change in the fight to reduce use of opioid-based medication.
Unmasking and reconnecting
Through the concept of Unmasking Pain, participants have been able to unmask themselves and reconnect with their own identities and creativity again. Sometimes, the creative activities proved to be a useful distraction and at other times they offered opportunities for self-discovery and new strategies to cope with pain, to the extent that pain was rarely a topic of conversation as the project progressed.
The highlight of the celebration event, however, was listening to pain livers read moving poems they had been motivated to write about their experiences. Hilary, who has Parkinson’s disease described her poems as being like baby birds that she carefully nurtures until they take flight. Meanwhile, Kathleen Wotton talked about her experience not only as someone who had found empowerment through creative writing but also as a sea swimmer.
No big pharma funding
An important aspect of Chazot’s and Cole’s work is their refusal to accept funding from big pharma for the research programme or the ‘Live Well with Pain’ web resources and training programmes. While many of us will be alert to the links between medical research and the drugs industry, we will be less aware of the way in which pharmaceutical companies attempt to ‘sanitise’ their reputation through arts sponsorship.
Until recently the Victoria and Albert Museum was one of several museums and galleries to benefit from money from the Sackler family whose company Purdue Pharma has played its part in fuelling the opioid crisis in the USA. With money for the arts in short supply and the UK still outside the EU Horizon research programme, it’s time for the government to recognise the true value of the arts in healthcare and invest in more programmes such as the Footsteps Festival – not just because it saves the taxpayer money, but also because it quite clearly helps to transform the lives of those living with chronic pain.
Julie Ward has recently been nominated a Durham University WRIHW Fellow, along with pain liver Louise Trewern, a co-founder of the Footsteps Festival and 10-Footsteps Livers Expert trainer, in recognition of her long and invaluable collaboration with Chazot and his team.