Guest blog: Supporting people living with long term pain

What does the recent NICE guidance mean for pain clinics in this country?

Personal view from Alf Collins, Clinical Director for Personalised Care, NHS England and NHS Improvement

The recently published NICE guidance re: chronic pain management ¹ has enjoyed a mixed reception. The purpose of the guidance is to improve the lives of people living with long term pain by improving the quality of pain management services across the NHS but many commentators, patient groups and national professional bodies have not been slow to criticise it, citing that implementation could lead to significant patient harm. (eg.^2,3)

So what does the guidance tell us that we didn’t already know? Perhaps first and foremost, it tells us that people who live with long term pain are not helped by most medicines. Well, I knew that when I first entered training in pain management in Oxford in 1987 – though of course the evidence base has evolved significantly since then.

And how about other treatments or management strategies? Broadly speaking (and with the honourable exception of acupuncture) the guidance also tells us something we’ve known for several decades – which is that management strategies that render people who live with long term pain ‘passive’ aren’t as helpful as those that enable people to manage their own pain, or perhaps more correctly those strategies that enable people to live their lives with pain. Given this, I found it surprising that the evidence supporting group self-management programmes (pain management programmes) is not of sufficient weight to come to a conclusion about their effectiveness – probably because the effective dose and optimal mix of the active ingredients haven’t yet been figured out.

So where does the guidance leave people who live with long term pain, and those who provide services for them? I am an optimist (as well as someone who led a non-interventive community-based pain management service for many years) and I think the future is positive, as long as we embrace the principles of the guidance and put in place services that deliver on those principles.

It means being honest with the public – and with individual patients – about what works, how well it works and what doesn’t work as well in terms of managing chronic pain, as well as acknowledging the numerous uncertainties (perhaps better described as yawning gaps) in our knowledge base. We do not fail people who live with pain by telling them the truth, albeit that the truth needs to be delivered with compassion.

It means, I believe, co-creating services with people who live with long term pain. What informed patients want from health services, and what we think they want are often very different indeed. So-called experience based co-design ⁴ is an established method of developing personalised services and should be employed much more widely than it is currently.

It also means acknowledging that people who are ‘complex’ don’t usually think of themselves as complex. And that people living with complex pain problems might well also live with multiple other long-term conditions and therefore be seeing multiple other specialists so that their care is fragmented and burdensome ⁵. There is an urgent need for their care to be co-ordinated and rationalised and I would argue that in order to do this, it should be delivered in the community with in-reach into community multidisciplinary teams from specialised services.

Lastly, as we think through the implications of the guidance for pain management services in this country, it’s worth remembering that because of the numbers of people involved, chronic pain is a population health problem that is not going to be addressed until we treat it as such. And one of the principles of a population health approach is to shift our investments from low value to high value services ⁶. Most of the recommendations in the new NICE guidance are indeed high value (as well as being low cost) – meaning we can reach more people (especially those in deprived communities) if we adopt them at scale across the NHS.

Adoption will be tough, and there will be many challenges and potential pitfalls, but the prize is what we all want – better services for more people who live with long term pain in this country.

References:

Personal views of Alf Collins, 24 May 2021