Rethinking pain: can a ‘do with’ approach prevent complex multiple conditions?

‘Pain?’ Lieutenant Scheisskopf’s wife pounced upon the word victoriously. ‘Pain is a useful symptom. Pain is a warning to us of bodily dangers.’ Yossarian laughed caustically. ‘Oh, God was really being charitable to us when He gave us pain! Why couldn’t He have used a doorbell instead to notify us, or one of His celestial choirs? Or a system of blue-and-red neon tubes right in the middle of each person’s forehead.’

Yossarian, the protagonist in Joseph Heller’s Second World War novel, Catch-22, speaks for us all – pain is no fun. But the Lieutenant’s wife is right: pain can warn us not just of immediate ill-health but also of more challenging conditions further down the line. A fact that has inspired the Rethinking our Health project – a collaboration between The King’s Fund and Here, the social enterprise well-known for its Community Appointment Days.

Research shows that pain, particularly that related to musculoskeletal conditions such as osteo-arthritis, plays a role in the development of type 2 diabetes and cardiovascular disease – three conditions that regularly present together. This is probably because people in pain become less physically active, suffer sleep disturbance, struggle with poor mental health and are prescribed painkillers that may increase the likelihood of heart conditions.

So, pain may be unpleasant but caught early enough, the right support can prevent it turning into something worse and may even help people stay healthier longer. Rethinking our Health is all about doing precisely that.

Evidently, it is a much-needed approach. In 90 conversations with people dealing with pain conducted by the Rethinking our Health project, there was an overriding sense that participants were not getting the support they needed. Words such as ‘abandoned’, ‘isolated’, ‘helpless’ were common. The reasons, as will be familiar to many, was not so much the quality of care received but the barriers thrown up by a creaking health system: inaccessible primary care, incomplete referrals, unco-ordinated services, inaccurate or contradictory advice.

So, what might be an alternative approach that not only gives people the support they need but also uses the red flag raised by pain as an opportunity to do some serious preventive work?

The interviews have been enlightening in this regard. Notably, there seems to be no problem with awareness about what people in pain should be doing. Almost universally people understood the importance of exercise, diet and sleep. But the problem was that the majority faced significant barriers to living that healthier lifestyle as the chart below reveals.

Equally, respondents were clear about what was needed to help them overcome those barriers.

How, not just what

Deliberative co-design sessions with patients, community groups, health and other public sector professionals built on these insights to generate four principles to inform the design of Rethinking our Health.

1. The health, public, and voluntary, community and social enterprise (VCSE) sectors must operate in a deeply integrated way to provide genuinely supportive and holistic care to those with pain.

2. Care needs to be highly accessible, local and led by the communities it aims to serve.

3. Communities and informal networks need to be mobilised to support people in pain to stay active and connected.

4. Any effort to help people in pain needs to leave a long-term legacy of change in the way health care is provided towards a much more holistic and preventative approach.

These principles can be easily summarised as a shift from an approach that does things to people in pain and instead does things with them and their communities. This ‘withist’ ethos recognises that prevention is not something done in a clinic by medical experts but has to be led by patients, their friends, families and wider communities working in a spirit of collaboration and mutual respect with health care professionals.

It’s the approach that will now inform the next steps for Rethinking Our Health as initiatives are developed, tested and refined in two areas of Sussex in close collaboration with Voluntary Action Arun & Chichester and The Hangleton & Knoll Project.

There is, however, one further principle at work. Rethinking our Health has been scrupulous in focusing as much on how its initiative is developed as on what it develops. It may be frustrating to some to read this blog and wonder what exactly Rethinking our Health is going to do. The simple answer is we don’t know yet. The project took a conscious decision not to let health care professionals design the ‘intervention’ but instead to allow the plan to emerge organically out of detailed conversations with patients and communities. For us, this is ‘doing with’ in action from day one.

Armed with these principles, Rethinking our Health may never quite assuage the anxiety of a Captain Yossarian but we might just learn enough to keep the neon tubes on our foreheads from flashing too furiously and for too long.